Big Pharma Tackles Treatments for the Rare Disease Community: Lundbeck, Acadia, Neurogene, Saniona, Longboards, Ovid, Takeda and Roche Pharma; Quindecim/Basmisanil Clinical Trials for Dup15q Syndrome.

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Early last year, Roche Pharmaceuticals announced they were conducting a clinical trial study of their drug basmisanil for young children with Dup15q Syndrome  called the Quindecim studies.  I assumed the drug is similar to flumazanil, an antidote for overdosing on Lorazapam (Ativan) but later found that although they are both reversal agents for benzodiapazines, their mechanism and receptor targets are different.  Basmisanil is a type of anti-benzodiazapine but unlike flumazanil, basmasinil was touted as being more selective to the target site of a protein, GABAa receptor encoded within the Dup15q chromosome (15q11.2-13.1) thus, hopefully leading to improved cognition and behavioral abilities.  At least, this was what was being advertised to the dup15q community.  Not long after the start of the clinical trial, Roche decided to pull the rug on the study leaving many participants confused and upset, From the beginning, I questioned why basmisanil, a drug that failed to show improved abilities in both Downs Syndrome and schizophrenic populations was being repurposed for Dup15q Syndrome.  Since Roche's patent on flumazanil was ending soon were they trying to capitalize on patenting another drug for profit?  One distinguishing phenotype of Dup15q Syndrome is the presence of a clear biomarker by way of an EEG tracing showing distinct beta waves which mimics that found in individuals taking benzodiapines. Would it be logical then to consider a drug such as flumazanil, an antidote for overdosing on benzodiazapines such as Lorazapam, could be the target of the Dup15q biomarker. Couldn't flumazanil, an already FDA approved drug on the market, be trialed on our kiddos? The receptor targets differ between the two drugs, and it is found that basmisanil has more specificity to the gene targets of Dup15q than flumazanil as will be explained below.    If that is the case, why did researchers use basmisanil for Down's and Schizophrenics who don't share the same duplicated chromosomal duplicated region of 15q11.2-13.1 found in  Dup15q Syndrome?  Was there even a shared biomarker target from Chromosome 23 (triplicate among individuals with Downs Syndrome) and 15 (duplicated among individuals with Dup15q Syndrome)? That seems a bit far-fetched to me.  I am impressed and surprised that some pharmaceutical companies are even tackling rare diseases as the market is miniscule compared to more prevalent health conditions such as cardiovascular diseases or cancer. Will they recoup the money spent on R&D for rare diseases such as Dup15q Syndrome? Could this concern be the reason why big pharma companies are buying up smaller pharmaceutical companies that already invested a lot of money in drug discovery so as to reduce the cost of starting from the ground up?

Within less than a year of advertising basmisanil for clinical trial for the Dup15 population, Roche pharmaceuticals decided to terminate their study for financial reasons (click for details).  Many families who signed up for the study were left devastated and their hopes dashed for a potential cure or at least improvement in cognition, communication and daily living skills. This may be way out there and a very unorthodox suggestion but has anyone considered administering flumazanil, a benzodiapapine antidote, specifically lorazapam (Ativan), for seizure control? It would definitely be an off-label use of it. But given the EEG biomarker for the syndrome being unusual beta waves that mimic people on benozo's, I wonder if it could actually reduce seizure frequency and intensity and improved cognition? Researchers were hesitant to trial flumazenil for risk of increased seizure as that is one of the adverse effects in the "normal" population. But I wonder if such a detrimental side effect could paradoxically turn out to improve seizures in the Dup15q population as they have different biology to the normal population. Basmisanil’s mechanisms of action differs from flumazanil in that the former works as a selective negative allosteric modulator of the GABA alpha 5 receptor, meaning it binds to the GABA alpha five receptor and inhibits its function, primarily impacting cognitive processes and affective symptoms such as depression; whereas, the latter works as a “potent benzodiazepine receptor antagonist that competitively inhibits the activity at the benzodiazepine recognition site on the GABA/benzodiazepine receptor complex, thereby reversing the effects of benzodiazepine on the central nervous system.” Does flumazanil only work in the presence of a benzodiazepine and has no effect in its absence? Since Roche gave up on the basmisanil clinical trial and we already have flumazanil on the market, I wonder if any doctor would be willing to prescribe it for seizure reduction or for improved cognition. Saniona did a preclinical study that showed that selective modulation of GABAa between flumazanil and basmisanil at similar concentrations was about the same and it was not very impressive. see Time stamp 13:20

Ovid Therapeutics is another biopharmaceutical company "dedicated to developing medicines for brain conditions with deep unmet needs". Ovid is developing a pipeline of potential small molecule medicines that seek to meaningfully improve the lives of those affected by diseases of the central nervous system." Researchers at Ovid were trialing a small molecule, TAK-OV935, for seizure reduction in a small cohort of individuals with Dup15q Syndrome. One parent of a son in his 30's said they trialed it for 8 months but showed little to no change in seizure reduction and had abandoned the study. Some families who participated in the study decided to "remain on the drug in an open label extension as they saw other benefits." Ovid then sold the drug to a bigger global pharmaceutical company headquartered in Japan called Takeda Pharmaceuticals whose company website states that they "aim to transform lives, helping patients with limited or no treatment options including rare diseases among many others." I wonder if Takeda is still considering a treatment for Dup15q Syndrome.

An international pharmaceutical company headquartered in Denmark called Saniona that specializes in finding drugs for neurodegenerative diseases, announced they are considering starting phase 1 clinical trials in 2026 on their compound SAN2465, a novel potential first-in-class rapid onset GABAa alpha 5 negative allosteric modulator indicated for depressive disorders but also positioned for "rare diseases".  It targets the same GABAa receptor clusters similar to basmisanil and duplicated in the15q11.2-13.1 region but has a 1000-fold greater specificity to the dup15q targeted gene product than either flumazanil or basmisanil. Since researchers believe excessive GABAa activation in the duplicated 15q region causes the unique beta wave biomarker found in EEG tracings in Dup15q, they hope the drug will reverse this increased beta power by inhibiting the GABA alpha 5 receptors as stated in their presentation (time stamp 11:50).  They don't come out and say explicitly that this reduction will result in improved cognition but given that was the desired outcome from the basmasinil study, I am assuming that reduced beta wave activity results in improved cognition.  I am also hypothesizing that there may be a reduction in anxiety and depression, affective symptoms very prevalent among Dup15q, especially anxiety, as this compound is also being studied for depressive disorders. Why not also look into seizure reduction as another variable to monitor along with improved cognition and affective behavior?  Who's to say that decreased beta waves wouldn't improve seizures?  Their rat study data using deprivation of sucrose as a stressor and ketamine, an MDNA antagonist, as the positive control shows the compound "fully reversed" stress-induced anxiety and cognitive impairment. (see time stamp 16:30)  I asked a few Duper parents what their children's response to ketamine was and most said there was no adverse reactions noted except for some sedation.  However, one parent stated that ketamine made all four limbs shake for their child and the doctor explained to her that this sometimes happens.  Perhaps this is a general side effect common to most people and not a concern of contraindication for Dup15q individuals.  Saniona's CSO, Karin Sandager Nielson, remarked on Dup15q Syndrome, "There is no FDA approved treatment for this syndrome.  Epilepsy is just treated with standard antiepileptic drugs and the psychiatric symptoms are treated with SSRIs and antipsychotics and that is really not a good option for these kids.  So, there is a significant medical need, in particular, for the psychiatric symptoms including intellectual disability.  There is a very direct link to the GABA a 5 target in that part of the genes that are duplicated in this syndrome comprise the genes that encode for the alpha 5 protein.  The extra gene numbers result in excess alpha 5 in the brain and can be demonstrated by the enhanced beta wave activity [on an] EEG.  The clinical value property for this drug is we want to normalize this hyper-inhibitory GABAa activation through the GABAa 5 negative modulation".  In layman's terms, it's like plugging up these extra receptors with the experimental compound.  I would assume dosing will be a very critical variable to study in the clinical trial because we need to find the right dose, just enough to plug up the extra receptors but not too much to plug up more than needed.  Wrong dosing amount could lead to inaccurate results of its efficacy. But how do they know how much is enough? Would adequate reduction in beta wave activity on an EEG be a sign of right dosing? 

 Did Roche drop their basmisanil study because they knew another company was studying a compound that was 2 orders of magnitude greater in potency to their product?  Roche dropping their basmisanil study left many families upset and with dashed hopes, but I am learning that one setback doesn't necessarily mean the game is over.  Pharma companies want to make money and survive, and their strategic decisions may seem callous on the surface but there is always something else brewing in the backdrop that we don't necessarily have privy to know.  In the end, rather than being swayed by heavy emotions, it is best to just trust in the process, be patient and have faith that someone somewhere is working on the problem, and the solution will eventually come to light.  Saniona also has two other compounds ready for Phase 1 trial, SAN2355 and SAN2219 that target focalized and generalized pediatric epilepsy and acute rare seizures "with opportunities in rare and severe epilepsy", respectively. There is another product, a "GABA Program" in the preclinical stage also indicated for epilepsy and positioned for "rare pediatric epilepsy syndrome."  Could they be implying a Dup15q cohort study or are they thinking of another rare disease? I have a feeling they are thinking of my son's syndrome. 

On a side topic, there is another study promoting  Bexicaserin (click for info) , centrally acting serotonin 5-HT 2C receptor super-agonist which is a Phen fen analog (what???) study to reduce seizures.  Yes, a Phen fen analog to treat seizures on my kiddo! Are we willing to potentially destroy healthy heart valves in exchange for the peace we get from seizure reduction?  A word of caution: In our desperate pursuit for finding a cure we must be careful not to get exploited.  Their trial stopped prematurely citing financial reasons.  The company that was doing the drug trials, Longboards Pharmaceuticals a company based in San Diego, was  bought out by Lundbeck, a Danish pharmaceutical company! I wonder if this is why Lundbeck got interested in Dup15q and more specifically, Lennox-Gestault Syndrome. Per their press release, "Longboard's 5-HT 2C receptor super-agonist Bexicaserin for seizures associated with rare forms of epilepsy [they are referring to Dup15q specifically], which is due to start phase 3 within the next few months, will round out the quartet – assuming of course the takeover completes as expected."  It makes sense that Lundbeck would buy out Longboards as both companies are looking at the same 5-HT class of receptor targets for neurologic disorders. At the end of January of this year, they announced positive results for their bexicaserin study (Click for link to study).

 Interestingly, Lundbeck has a patent on the antidepressant, vortioxetine aka Brintellix/Trintellix. This is an antidepressant via SSRI/5-HT1a Receptor partial agonist; serotonin 5-HT3 receptor antagonist, serotonin 5-HT3  and serotonin modulator (LexiDrug). Lundbeck's website states, " No other MDD medication is thought to work exactly like Trintellix.... The mechanism of the antidepressant effect of Trintellix is not fully understood, but it is thought to be related to its enhancement of serotonergic activity in the central nervous system through inhibition of the reuptake of serotonin (5-HT),....The contribution of these activities to the antidepressant effect of Trintellix has not been established."  -Leslie Citrome, MD, MPH

One of the scientific advisors to the Dup15q Alliance, Dr. Larry Reiter of the University of Tennessee has been studying the effects of 5-HT (5-hydroxytryptamine) class of receptors in seizure reduction in drosophila fly Dup15q models.  The results of this study (click for details)  showed that among various SSRI's, Trintellix (vortioxetine) showed promising reduction in seizures followed by mirtazapine (remeron), wellbutrin and pregabalin (Lyrica). The paper states, "Recently, our group identified an EEG biomarker in children with Dup15q syndrome, which has now been confirmed in other cohorts by high density EEG analysis. This biomarker could potentially be used to assess the effects of treating children with Dup15q syndrome with 5-HT1A agonists like vortioxetine, an antidepressant, in an offlabel trial for seizure suppression in these children. Preliminary studies presented here show that vortioxetine is just as efficient in suppression of seizures as serotonin and more efficient than commonly used AEDs felbamate and valproic acid in our fly model (Figure S9)."  I was almost tempted to supplement Lucas with 5HTP to see if any seizure reductions occurred.  Either that or feed him turkey everyday.  The SSRI link made me wonder if there is a connection to why so many people with the syndrome have GI issues, notably severe constipation.  About 70% of serotonin is generated in the gastrointestinal system and is primarily linked in the "gut-brain axis" click for link; so if there is a pathology with the serotonin receptors along with hypotonia causing weak peristalsis of the abdominal muscles could they possibly contribute, or be the cause of severe constipation so prevalent in Dup15q Syndrome?  Also, I wonder if Dr. Reiter can get sponsorship from Lundbeck to continue his study or, would that be a conflict of interest due to his position in academia?

Is it a coincidence that Dr. Reiter's study on the SSRI's that affect 5-HT class of receptors, notably the promising results of Vortioxetine (Trintellix) and Lundbeck, makers of Trintellix and their acquisition of Longboard pharmaceuticals who also were studying the promising effects of 5-HT 2C receptor superagonist for seizures related to "rare forms of epilepsy all lead back to a class of SSRI's that target 5-HT receptors?  These don't seem coincidental but orchestrated around the same target for drug discovery.  The question I have is, are they looking at the right target and is it specific enough to target the overexpressed genes of the 15q region duplicated in the Dup15q Syndrome?  Only further studies will tell if it is or isn't.  

Acadia Pharmaceuticals is another company that has a clinical trial pipeline for a drug to treat Rhett Syndrome (click for more info.)  and Prader-Willi Syndrome  The latter is promising as it is in the same duplicated chromosome region as Dup15q Syndrome.  The company already has an FDA approved drug DayBue (trofinetide) to treat Rhetts. Another company named Neurogene, started by Rachel McMinn,whose sibling has Rhett Syndrome, focuses on "genetic medicine". This company has been in contact with the Dup15q Alliance for a possible collaboration with our families.  How exciting would it be to have a drug personalized for Dup15q, also! And shout out to all the amazing siblings affected by rare syndromes! 

Karin Sandager, CSO of Saniona, was absolutely right when she said giving generic anti-epileptic drugs and antipsychotics to our children is not acceptable. If we could give just two pills, one that is a negative allosteric modulator of the GABAa alpha 5 receptor and another drug targeting 5 – HT receptors instead of 5 antiepileptic drugs and 4 antipsychotic drugs, it would be a godsend!

I found no pharmaceutical companies studying the effects of amplified UBE3a gene products, a protein which was the buzz topic among Dup15q Alliance and assumed to be implicated in autistic features.  Whatever happened to UBE3a studies?  

A successful drug discovery process requires many good players dedicated to getting the drug to market from pharmaceutical companies with its vast resources to the brains of academics but at the heart is the patient and their advocacy groups who must remain vigilant and dedicated to making sure the other players are working in good faith and for the benefit and safety of the patient because while the motivation for the other parties may be financial gain, advocacy groups are the ones truly vested in the patient's welfare for its own sake and not swayed by other more worldly incentives.  

" Do you see having a child with special needs being related to the concept of karma?" and Artur Tadevosyan

I recently found a Facebook page of someone called Artur Tadevosya,spritual author, psychic and channeler and although I don't follow people as such, one of his reels showed up on my Facebook feed.  It is really uncanny how Facebook brings up posts that are related to my thoughts even without me having verbalized them into existence.  Anyway, a question about children with special needs came up, to wit:

 Q: Do you see having a child with special needs being related to the concept of karma?

Artur Tadevosyan:  Sometimes yes and sometimes no. There is no definite answer to this. When it's karmic, the soul takes the body of the child getting born into that family and deliver them the message they need to experience. Sometimes it relates with an early exit, so they die very young. By causing enormous pain to the parents but delivering lessons to them.  Some who come with disabilities, I would say most of the time, is about helping.  Sometimes, it will cause pain most of the time but in the end, it's about helping the parents to achieve the next level of awareness, of understanding the next level of emotions which we never experienced in past lives.  Most of the time, it's quite old and advanced souls with humungous higher selves who took upon themselves this task to help us. To understand.  To learn, to experience pain and through that, great love.

I have been told over and over throughout the years by various seers how advanced souls like Lucas incarnate into great disabilities to help humanity and the family achieve greater understanding of love.  I have often pondered why such awareness cannot be achieved through joy and happiness rather than pain and suffering.  The Earth classroom certainly lacks no pain and suffering and makes it an ideal place to grow and advance by those means.  

I've been on this spiritual/gnostic/metaphysical path for over two decades and having been "read" by countless seers, I have learned enough concepts and the lingo to understand the meaning of statements such as that made by Tadevosyn above but I forget that many, if not most, people have not been on a similar path as I and when presented with such esoteric concepts, they react strongly either for its validity or for its absurdity. 

On a Facebook support group for Dup15q Syndrome, I shared the reel with other parents who have my son's condition and asked what they think about his explanation for people with special needs.  I got a few that didn't even quite understand the message of Tadevosyan and became irate.  One mother simply stated, "no".   

Here are the various comments I received:

"D"  I don't believe a child is born with a disability as a result of divine punishment for something the soul did in prior lives or something the parents/family did in their current lives.

(He never mentions any such notion, but this idea of cause and effect for a sin is what this parent read into).

My response to "D": yes, I think that is what he is essentially trying to say 

"V" but...He didn't say that at all.  He said it's to bring lessons and new emotions to the family and the souls with a disability in this world are typically very advanced souls who take on this "job" of helping to advance humankind's development... I'm not saying I agree with im at all, but he definitely didn't say anthing about it being a punishment.  

My response to "V": Sorry, I meant I agree with "D" that this is not due to karma or punshment for a "sin" from the past.  As I interpret it, the path we were put on with our kids is to learn love on a deeper level through pain and suffering.  I'm not sury why we were put on this path.  Why not learn ove through the path of joy and happiness? Is the depth and nature of love we experience through pain much more deeper than the love we learn through joy?

"D":  The love is great, but I have difficulty believing some divine would deliberately cause an innocent sever suffering so that we could "learn" something.  But "om more a believer in a "hands off" God.  Karma and destiny don't play a part in my system.  We make our own paths and are impacted by biology, environment, etc.. 

"L" I have a problem with a philosophy that says "everything happens for a reason".  He didn't say that, but he seemed to allude to it.  There can be no good reason for kids to go through waht they go through with a disability.

My response to "L": I think the reason he says is that they are advanced souls who are here willingly to help humanity (and the family) advance to a higher level of understanding.

"L" I might believe that if I saw society becoming more compassionate as a result of knowing people with disabilties.  I'm afraid that's not my experience.  In fact, I think we're heading in the other direction.  

My response to "L": When I think of how brutally people with disabilities especially those like my son, were treated in the past, in institutions and out in society, and seeing how the collective consciousness has been made more aware of the evils done, I have to believe that they are changing society.  I'm no spiritual guru who can see how humanity evolves and grows over time but people like this guy seem to "see" on another level than most people. 

"L" I might just be more pessimistic than you.  People with mental illness were deinstitutionalized and then abandoned without the support they were promised.  Our prison system is now the leading provider of mental health care in the US.  And well more than half the people experiencing homelessness in the US have a mental illness, yet we have made being homes a crime, too.  Our collective consciousness has been made more aware of the evils done, as you stated, and yet we are repeating those evils.  We just elected a president who believes that people with disabilities are better off dead.  I wish I could find reasons to be hopeful.  I continue to look for them.  But I'm not having much success.  

My thoughts on her statement: It can be overwhelming when you think about all the problems the world is going through and as I sit here not knowing what I need to do to help, a thought comes upon me saying that just loving my family, taking care of Lucas and advocating for his needs, bringing awareness to my community, creating peace and harmony within my immediate circle is where I should start and where my greatest impact is made in helping the world.  No one person can solve all the societal problems we face but if each one of us decided to focus on taking care of what is immediately in front of us which may take personal responsibility and some sacrifice, the world will be better.  

My response to "L": I agree, the world still has so many problems, and this is no utopia we live in. Perhaps that is why special souls are sent by God to help make things better.  I don't profess to know how sending nonverbal, seizure-ridden, intellectually disabled people will make things better, but I want to believe it will work out for good in the end because the alternative would be to believe we are all screwed and things were always terrible and will be terrible.

"K": I learnt from his statement was they took upon themselves to teach us?

My response to "K" Yes, they didn't have to but did so willingly as I interpret what he says.  

"C" I don't believe it has anything to do with karma.  Karma is individualistic.  We all have very different backgrounds and yet everyone has something in their past they're not proud of.  If karma was involved, we'd all have special needs children.  I do believe it's what he said last, to experience pain (to bring us closer to God and to experience great love.  Loving a child with special needs is a much different love than the love for a typically developing child.  No more, not less, just different.  As a parent to a special needs child, I've experienced the loss of said child while he's still living, which makes me move him that much more.  Most parents, I believe, only recognize that specific feeling during the days and weeks after their child if first born when it's the strongest...love, fear and gratefulness all at the same time. Or, when something happens to them like a care accident or something life threatening. 

My response to "C": Yes, they certainly have changed us parents for the better even after so much pain and we get to experience love on another level (speaking only for myself).  I agree it can't be karma because even murderers get perfectly healthy kids!

"C" My son is my blessing.  I needed him to change the trajectory of my life.  I was going in the wrong direction. 

My response to "C":  That is so beautiful to hear.  

"U":  NO

"A": NO

"M": Absolutely NOT. It's as bad as the Christians saying God gives special needs kids to special parents.  As if we have done something for a creator to inflict harm onto an innocent human being. My red hair is a mutation that means karma would have had to come from my parents.  It makes zero sense to lay around blaming ourselves for a random act of nature.  

"C": Being atheist sure makes life simpler.  Instead of worrying about "reasons" and "penance" and "retributions" I just take care and love my beautiful boy to the best of my abilities.  

"D" I've never believed I was just given the child I was "just because".  It's been hard and I'd be lying if I didn't ask if I was being "punished" once or twice.  J's path is her path and it was chosen for her for a reason, and I may never know what that reason is.  I know I am her mother for a reason and not just to be her caregiver, but to learn from my experience of caring for her, I think if you really hear what he's saying you may have a better understandign of what "karma" really is, it's not always punishment for doing bad.  My husband and I often jok that maybe "J" saved us from a buring building in a past life and we are hger karma.  

"CH" :  What a load of ridiculous twaddle. 

"CH" may be the sanest out of all of us.  HaHa!  

Bathroom Selfie Tradition, 2024

 Every year on my birthday and during the Christmas season, I take a bathroom selfie to chronicle my aging process and indulge a little on fixing myself up to look girlie.  I can look halfway decent when I have the time to put myself together but sadly, I don't think this is how I look on most days. Taking care of two boys, one with special needs and working night shift means a messy bun and an occasional shower to get by on most days and I do miss doing hair and makeup as if I am going to "work".

  2024 selfies: 

Birthday 2024

Christmas 2024

It's Dinnertime at the Ahn Household.

My very responsible and dependable husband who always pays the bills on time and makes sure we are kosher with the IRS every year, has an annoying habit of sometimes repeating what I stated back to me.  As one example, the other night I stated that I have an EKG test in the morning as I checked the wall calendar.  A few minutes later, he repeated the obvious to me and said, "you have an EKG test tomorrow" as if I needed reminding or as if he wanted to claim that he knew before me.  This happens periodically and it annoys and baffles me as to his motivation but still, he has enough redeeming qualities for me to overlook this pet peeve of mine and keep him.   My little seven-year-old son cannot finish a meal by himself unless he is near starving without me having to feed him.  He sees Lucas, my 13-year-old special needs son being fed every meal and assumes that it is the parents' job to feed him, as well.  I have stated many times that he is quite capable and different from Lucas who needs extra help but at every mealtime, he starts eating independently but then refuses to finish his meal and would rather play or watch videos.  This kid just doesn't eat much to begin with.  Not wanting to waste food, I end up feeding him until he is done. Otherwise, his leftover becomes my dinner and many times I have felt like the human garbage disposal and although I could get a fresh plate of food for myself, the thought of waste doesn't sit well with me. The beneficial side of this habit, beside not wasting food, is that I have lost weight as my portion size has shrunk. 

Yesterday, Lucas came home with a note from school suggesting that he may have had a seizure in class and that he was very upset and screaming for a few minutes.  Doctors may not have classified his screaming fit as a type of seizure but I am convinced the times he stomps, screams (as if it pain or in abject torture) and biting his finger are a yet unclassified seizure type.  It isn't what is already known such as absence, tonic-clonic, head drop or myoclonic.  If I had to name what I witness, I would call it the scratch-and-pull-mommy's- hair- as-I-hit-scream-and-stomp-and-as-if-I-want-to-crawl-out-of-my-skin seizure type. That is quite the adjective no professional would use so maybe the closest could be "tonic-clonic, type 2" or some such nondescript clinical name which absolutely does no justice to what actually transpires during one of these spells. 

 Before dinner, out of the blue and unexpectedly, Lucas had one of these seizures which lasted for 30 minutes.  We are closely surrounded by houses on all sides and so to prevent any suspicion of child abuse (God forbid some Karen would call CPS) we immediately shut all windows and doors. I should know better than to try to hold him or calm him down but doing nothing and just watching makes me feel so helpless and useless and within seconds he has grabbed my hair and pulling it ferociously and has scratched my legs and arms.  Imagine someone drowning in the high seas and they are grabbing onto any raft for dear life.  That is exactly how I would describe Lucas in this seizure type.  Einstein was right, time is relative and 30 minutes can feel like an eternity with no end in sight.  Usually, I can accept his condition with a sense of defeat and resignation but this time, I felt enraged that he has to suffer so horribly, and I have to be injured; his little brother has to be startled and scared and his dad has to feel helpless.  Without meaning to or even conscious of my actions, I projected all my rage and anger to the two people I love the most beside Lucas which is Tae and my husband. My short Korean temper got the better of me and I yelled at Tae for not ever finishing his meals by himself and not cleaning up after his toys.  I screamed at Gabriel for stupidly repeating things I have already stated.  I might have kicked a few items on the floor, too for added effect. They both fell to silence, stared at me and proceeded to quietly finish their food. 

This is the first time I really wished his syndrome away.  The first time I said I wish he never had Dup15q Syndrome and all the crazy seizure crap that goes with it and that he were just a normal boy who says things like "I love you, mommy". He is 13, almost as tall as I am and with a kung fu grip that gets powerful during fight-or-flight situations such as fighting for your life during an electrical firestorm in your brain. How will I manage him going forward as he continues to grow?  

When the ordeal was done, Lucas was back to his sweet self and even gave me his beautiful trademark smile and a few giggles.  I was so relieved to see him back to his cheerful self but I was still very angry, angry, angry.  It was as if a switch had been turned off and as if the incident never happened to him.  I couldn't and didn't do much for him but I wanted to make sure I was there for him no matter what, even if I got injured because that is all I can do, just be there as a standby witness to the torture so he wouldn't have to endure it alone.  That is the highest manifestation of how I can show my love for him.  Witnessing a loved one going through something horrendous can be just as tortuous as for the one going through the ordeal.  And it wrings my heart that I can't do more.  The happy ending for me was seeing him smile and although he can't talk, it was as if he were saying, "thank you for being with me through this".  

The next day I apologized to Tae for yelling at him during dinner and explained that it's because mommy doesn't like to see Lucas sick and having seizures and he replied, "It's ok mom. Don't worry, I understand.  I forgive you." For being 7, he had to grow up fast and develop deeper insights into situations than I had wished.  Hopefully, though, that is a good thing.  

So, there you have it, an exciting dinner time at the Ahn household with me, my husband, two boys and Dup15q Syndrome.  If I host a supper party, would you come?

Special Needs Parenting and the Korean Drama, "Move to Heaven"

 There is a joke among special needs parents that goes something like this, " I haven't slept in decades due to my child's insomina/seizures, etc... so I will sleep once I am dead".  Of course, the initial thought that runs through the mind of a parent of a special needs child after getting a diagnosis is, "I can never die!"  You develop a weirdly dark sense of humor while living through this journey, but it helps to keep me sane if not entertained...or does it?.  

I just binged on what I consider to be one of, if not, the best Korean drama series on Netflix I've ever watched called Move to Heaven.  The plot centers around an adopted autistic young man who was raised by a single father and make a livelihood through the family "trauma cleaning" business. The mission of this business is to clean out the homes of people who died alone and whose bodies were discovered days or weeks later.   One day, the father dies unexpectedly from a heart attack leaving the young man alone in this world until a long lost "uncle" recently released from jail is assigned a trial guardianship for three months.  The remainder of the plot revolves around the two characters as they learn about life and death, love and loss as they gather precious mementos from their deceased clients.  There won't be any spoilers from me here.  It is so profound and beautiful that any commentary on it here would do it no justice.  I don't really watch many Korean dramas but series like this is why the whole world is addicted to Korean Dramas. You have to watch this. The acting, the creative story line, the emotions that are conjured up from grief, inspiration, happiness, wisdom... it can all be very sad yet very healing to watch at the same time.  I was initially drawn to the series as a mother of a child with cognitive delays and autism as one of its main characters has autism and I cried and cried on many episodes about his sudden predicament, but I came away with so much more.  It's as if my heart exploded a little with each episode. 

Plus, I found my first "oppa" actor who blew me away, Lee Je Hoon, and I am such a fan!!! 

Begpackers, Travel Vloggers and the Journey to Self Awareness

 

Ulsan, S.Korea

There is a recent controversial trend among young, middle-class youth in the West who travel around the world, particularly in Southeast Asia without any money but sell trinkets such as bracelets and postcards or beg for their travel expenses from the local people of the countries they visit. Many denounce this practice as being irresponsible and unfair as they take away revenue from local people who make a living by selling similar goods to travelers.  There are others who post travel vlogs on Youtube and solicit donations for food and lodging from their viewers in exchange for sharing their travel experience.  One such vlogger I came across by the name of Nick K bicycles his way around Asia and asks for monetary donations or a "hot shower host" for when he needs a place to crash or wash up.  Apparently, this practice is very common among cyclists who journey far distances.  After teaching English for 11 years in Japan, Nick has cycled his way all over Japan, Indonesia and Taiwan and has cycled from Pusan to Seoul, South Korea.  His adventure was noticed by the Korean news medias and he has become somewhat of a celebrity, so much so, that he went viral with over 1.7 million views and people recognize him on the roads and offer him drinks and snacks.  His videos are such a sensation, he decided to travel from Seoul back to Pusan using an alternate route.  Although it seemed a bit strange to be asking his viewers to fund his journey, I actually really enjoyed his videos so much that I donated a small amount to cover "a cup of coffee" in gratitude for the positive message about humanity.  

What I really love about his videos is his genuine openness and appreciation of the places he visits and the people he meets and how local people reciprocate with kindness and curiosity.  I have only watched vlogs from his Korea travel, but I always come away feeling warm inside knowing that there are so many good, kind, decent and hospitalable people in the world (well, at least in Korea).  Every day he encounters simple acts of kindness like a passing car handing him a can of coke, or an innkeeper sharing a slice of cold watermelon on a hot and muggy August night in Korea, then with care, placing it on a stick so it would be easier for him to hold.  Other encounters include a local family giving him a free place to sleep or "hot shower hosts" letting him stay at their place for free, an elderly couple sharing their mung bean pancakes on the side of the road and other hosts taking him out for amazing dinners, notably the Kbbq experience. I watch every episode with my mouth wide open at how good and kind people can be and it is so refreshing to see something so good about humanity in contrast to what I see daily on the evening news.  I'm not sure how safe it is to travel solo across America given the higher rate of crime, distrust of others created by the current political climate but if one is plugged into that subculture, I'm sure goodness can be found here, too.  Nick had a "hot shower host" in Daegu who cycled solo across America.  I would love to see his videos, but I don't think he made any but there is a lady who cycled over 80 countries by herself (click for link ). I donated a small amount to show my gratitude to Nick sharing such a positive experience and it gives me hope for humanity, especially right now when everything seems so off kilter and plain nuts.  

Inspired by a recent Mel Robbins podcast when she asked a man who hiked solo across the Appalachian Rockies, "what did you learn about yourself from your journey" I asked Nick what he learned about himself and life from his travel.  I guess the question took him off guard because he laughed and maybe felt a bit self-conscious but he answered that he learned that humanity on the whole is really very good, kind and generous.  Now, if you haven't experienced or learned anything while on this Earth, isn't that the one thing to be proud to take back to God when you die instead of reporting how evil and wretched humanity is?  The guest on Mel Robbins show answered her that "you take your baggage with you".  Like the saying, "wherever you go, there you are", it's better to face up to your shit and deal with them as best possible, instead of trying to run away from them.  

During my senior year of college, as a foreign exchange student at the University of York, England, I attempted the "Coast to Coast" solo cross-country walk starting from the Irish Sea to the North Sea. I only made it out of the Lake District, which was probably the best part. The thing I learned that most sticks out in my mind and has shaped much of my life after the walk, is the importance of family and community.  Walking for days alone in a foreign land with no sense of familiarity to anything, it became very clear to me the true importance of meaningful connections with people, friends, family and even strangers.  

I am fortunate enough now that I can travel with some comfort with my husband and two boys but traveling while young, on a very limited budget, allows to you see and experience things you wouldn't otherwise be able to in comfort. 

Korea Trip Log Summer 2024: Ahn Family Adventure Series

 Seoul bound! Heading first to LAX then Inchon airport and to our air BNB Artmonstay at Myeongdong for check in! We will be losing a day from the time difference but hopefully the boys will not be too jet lagged. Dinner at the historic Mah Jang meat market for Hanwoo beef, Similar to Kobe or Wagyu beef. We purchase our meat from the market and take it to the various restaurants upstairs who will give you a table with a charcoal grill, side dishes and a selection of beer or soju. Liam said it was the juiciest meat ever.

Artmonstay Air BNB at Myeongdong, our home in Seoul for a week. A bit hilly to get to but with incredible views and a site for K Drama filming. We explored our neighborhood, ate at a Michelin rated restaurant for lunch ( without breaking bank) #myeongdonggyoja, stopped by Olive Young for K beauty stuff for me, people watched, enjoyed buskers, caught an amazing show, Nanta and then took an Uber back to our stay! It was a full and fun day!

 Cafe culture in Korea is quite a sight to behold and experience. There’s so much creativity and charm in each cafe we visited. This is an old theater converted into Starbucks. A place for gathering, people watching and live entertainment.

Korea trip log 13: Starfield library

 we made it to the historic city and my birth place, Gyeongju. We picked up halmoni from the nursing home and visited Bulguksa temple ( or as Liam says “bulgogi” temple) and Seokguram grotto, a UNESCO world heritage site. Over a thousand years old, these spiritual sites were made in the Shilla dynasty and is still a functioning Buddhist temple.

 outdoor library at Cheong Gye Cheon stream in the middle of the hustle and bustle. The water is soo clean and the area is very peaceful, Liam and I grabbed a book and relaxed with our feet dipped in the cool, refreshing water.

A day trip to GapYeong Rail Park was so worth it! Amazing views of farms, mountains, rice patties, imaginative tunnel displays, rivers and streams, raspberries all along the route, clean air, amazing sunset, waving to farmers (and them waving back!) Liam said this was his favorite part of the trip so far!

We took a day trip to Nami Island, the filming site for the famous K drama, Winter Sonata. What a change from the hustle and bustle of 10 million people living in Seoul central!

A surprise trip to Little Italy for pasta and petit France for ice cream! Story goes that a rich businessman had a penchant for collecting Italian and French antiques and decided to open a “museum”. Beautiful scenery and yummy food!

 A fun day with halmoni at Gyeongju and Bomun lake! We had jjajiangmyun which I was craving and rode the swan boat.

Today’s itinerary included a visit to the Dongdaemun Design Plaza and Children’s Grand Park and museum. Liam got in some piano practice and also learned how to navigate around the subway system!

Today we visited Garden of the Morning Calm, about 45 minutes outside of Seoul. It is my favorite garden to visit in the world! So peaceful, calm and healing. I could stay here all day.

We visited the National Children’s Museum which the kids loved. There are so many fun interactive displays!

 We made it to Ulsan, a port city, and are staying at an air BNB above the Mercure hotel on the 30th floor. The apartment and views are amazing and has easy access to the pebble beach below! It also has a room with an adjustable bed and bedside table perfect for my mother. One thing about Korea I noticed is that everyone is so deferential and thoughtful to the elderly.

Spent the day at the Royal court at Gyeongbokgung palace. It’s so fun to see people from all over the world dressed in traditional Korean clothes walking the palace grounds.