A Project Celebrating Differences and Triumphs
Kylin is Beautifully Different
Meet Kylin! Kylin was born with Dravet Syndrome, which is a rare, intractable, lifelong form of epilepsy. It effects 1 in every 16,000 children within their first year of life. Dravet Syndrome, also known as “Myoclonic Epilepsy of Infancy”, and has many devastating side effects. Some include sensory integration, behavioral and developmental delays, frequent and prolonged seizures, sleeping difficulties, and chronic infections. There is no current cure for Dravet Syndrome and treatment options are at a minimum. Kylin is Beautifully Different!
Kylin’s parents learned of Kylins difference around 8 months. He had his first seizure after his 4 month shots, and his second occurred at 6 months, unexpectedly. Kylin has had many long hospital stays, but the his most recent hospitalization was his most extensive.
Kylin had a seizure that lasted hours, which in return resulted in him having a breathing tube and being flown to rainbows. Unfortunately, He spent 22 days in the PICU, and virtually all of that stay he was intubated. He would not wake up after all sedation medications were being stopped, his EEG was picking up seizures, and he was extremely ill. The physicians ran all tests, and checked all levels to attempt to find the source of his reoccurring fevers. Para-influenza was his positive conclusion, and that had taken a toll on him. The Para-influenza had caused Acute Encephalopathy in the Occipital Lobe of his brain. As days continued, Kylin finally awoke from his coma status. Due to the effects on his brain and his current mental state, doctors were recommending he go to a rehab facility.
His experience at the rehab center was one accompanied by an emotional roller coaster day in and day out. Kylin had an NG Tube, wasn’t talking, walking or showing any signs of his baseline. His myoclonus was getting worse, and they knew the only fix was medication increases. This was a long road of everyday therapies, 24/7 care, and lengthy drives back and forth. On January 19, 2018, Kylin went home and has made a remarkable recovery, which surpassed every expectation from his physicians! He is running, playing, talking some, and is more endearing than ever.
A Day in the Life of Kylin
Kylin has therapy Monday through Friday, four therapies twice a week. He attends school after therapy each day for two hours. He could not adjust to an all-day typical classroom, with a large amount of children. Additionally, Kylin cannot go outside on warmer to hot days, he cannot become over excited, he takes 5 medications 3 times daily, and he has a mentality of a 2 year old. Hhis life revolves around constant doctors appointments, therapies, hospitalizations and being indoors.
Resilient. Heroic. Loving.
Kylin is amazing! He is a superhero!! Kylin has taught his family the true meaning of love, and how to not take things for granted. Undoubtedly, the impact he makes on them and others is truly a blessing. Above all, he has a smile that brightens the world, a hug that moves mountains, and a heart filled with the purest love!!
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