A famous children's praise leader came to dedicate her life to serving children after two of her children died as a result of a car accident in which she was the driver. On her way to church, she ran a red light as she was distracted by the children in the rear. As a result, Jana Alayra's's car was totaled and while she escaped the accident unscathed, her two children in the backseats lost their lives. Her life is devoted to teaching praise music to children and she holds concerts all over the country as well as maintain popular YouTube videos.
Julie Cluff was a devout Mormon who fell asleep behind the wheel and crashed her car killing both her children in the back. As a result of her actions, she lived with extreme depression and guilt for many years. The trauma was so severe that her third eye blew wide open and she found that she could no longer uphold her Mormon faith as it was not aligned with beliefs that were being revealed to her. She developed supernatural abilities to heal people, developed mediumship abilities and became an open channel for the wisdom of celestial beings who guide and heal humanity.
A mother of 3, one with Dup15q Syndrome, advocated and invested so much of her time and effort for the sake of her special needs child and the community of families who shared the same syndrome only to have her neurotypical child succumb to cancer and pass away.
Isn't life sometimes so unfair to have the unthinkable happen to good people?
Death from SUDEP is a real concern especially for Lucas who continue to have nighttime seizures but more concerning than SUDEP I recently found is respiratory illnesses. A day after his 15th birthday, Luki had to be hospitalized for almost a week for the first time in his life due to having contracted mycoplasma pneumoniae, also known as the "walking pneumonia". What scared me the most was not the high fever, lethargy and poor appetite but his inability to effectively clear his mucous since his cough is not as strong as most people, perhaps due to his hypotonia and a weak diaphragm. I'm not sure if that is the reason but that is my hunch since I contracted the same bug as he but was able to cough up the gunk which helped me feel better. It was hard to see him struggling to breathe and unable to clear his lungs because I knew firsthand how thick and suffocating it was and not being able to clear it would have driven me up the wall. But Lucas being Lucas, never complains not just because he is nonverbal, but because he has never become aggressive when he gets frustrated. It's just not in his nature.
We took him to the ER and when his oxygen saturation dipped to the 80's and 70's and his heart rate ran up to 160's the doctor decided to admit him. He received chest physiotherapy and lots of IV fluids as well as the broad spectrum antibiotics and eventually honed to Zithromax, which they said was specific for the type of bug he caught. It is scary to see someone, let alone your child, gasping for air unable to breathe as the pulse oximeter loudly alarms. The Angelman Syndrome published a study on the main cause of mortality among their children and number one on the list was not complications from seizures or SUDEP but respiratory distress. Having just learned that fact a few months ago alerted me to the urgency of the situation. I would have otherwise had him rest it out at home; after all, I'm a nurse and could confidently take care of his medical needs but that paper made me jump to action earlier than I would have had I not read it sooner and learned of the higher risk of mortality involved with respiratory issues. I've found many other parents of Dupers have also experienced hospitalizations from respiratory illnesses and seem to understand how serious it can get. This hospitalization and our early intervention were a direct result of published research made available to parents who can be made aware of the dangers of this syndrome and promptly act on their knowledge. Someone needs to do a study and publish a paper on the risk of respiratory illnesses/distress on Dup15q Syndrome, as well. There are a handful of children who I know have passed away with that diagnosis.
With early and proper medical attention, Lucas is back to being his happy self now. He must be cleared now as he doesn't cough but I wonder if that is true because I still have a lingering cough which hasn't gone away even after almost a month. His appetite isn't what it used to be so maybe he isn't 100%, yet. It was a bad infection to go through, but I am grateful I had it at the same time as he did so I can compare and contrast how a typical person responds to it versus how Lucas endured it.
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| The respiratory therapist made us a home chest physiotherapy tool out of a mask from an Ambu bag and a tongue depressor. Machines that do the same job can cost thousands of dollars. |
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| Luki and the fam! He is back to enjoying life. Here he is at our 4th of July picnic at the park. |
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