Support 5 year old Jack's Battle with Rare Genetic Disease

As many of you know, my now 6 year old nephew, Jack Watson, has been battling serious illnesses and frequent hospitalizations since shortly after birth. Recently Jack's parents & siblings received the news that all of Jack's challenges can be attributed to a rare genetic syndrome, VSVS. Unless Jack experiences supernatural healing from God, these will be lifelong issues for Jack and his family.

So many friends, family, neighbors and coworkers have reached out asking what they can do in addition to joining us is prayer. That is why I have decided to create this Go Fund Me page. Please read Jack's story below as written by his dad, my brother, John.

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Jack was born with a very rare Heterozygous mutation in the DEAF1 gene which caused Vulto-van Silfhout-de Vries syndrome (VSVS).

Jack is a generally happy little boy who loves to snuggle up to his parents, siblings and caretakers. He has good days and bad days and his beautiful soul shines like a brilliant light on his good days. He loves the outdoors, jumping on the trampoline, airplanes and helicopters and, oddly enough, watching football on TV.

Vulto-van Silfhout-de Vries Syndrome is an extremely rare hereditary disease associated with impaired intellectual development and speech, delayed psychomotor development, and behavioral anomalies, including autistic behavioral traits and poor eye contact, hypotonia, gait disturbance, a high pain threshold, and sleep disturbances. Jack rarely sleeps through the night and sometimes has bouts of hyperactivity. He has many food allergies and gastrointestinal issues. Due to his very small range of acceptable foods, and his taste for even fewer, he has a highly limited and specialized diet.

The DEAF-1 mutation caused his natural immune system to lay dormant as he contracts bacteria and viruses that would normally not become a serious issue for kids his age. At 6 weeks old, before we knew he had VSVS, he contracted bacterial meningitis and cytomegalovirus at the same time. He nearly passed away from the resulting encephalitis which caused three small strokes and moderate brain trauma. This resulted in additional developmental delays, hydrocephalus, and later seizures.

He has been diagnosed with intractable epilepsy, which means none of the seizure medicines he has taken over the last three years have effectively controlled his seizures. He has periods of peace and quiet and doesn’t have seizures every day, but sometimes he has several seizures a day for multiple days in a row, cluster seizures.

The Hydrocephalus caused an increased growth rate of his skull due to an excessive buildup of cerebrospinal fluid. His body produced more cerebrospinal spinal fluid as a result of the meningitis, and he had two surgeries to reduce the pressure in his skull and stop the excessive growth. Miraculously, the pressure and growth have both ceased.

The DEAF-1 /VSVS combination is so rare that there isn’t much information or research on it. He has been added to an ongoing study and will be sharing information on treatments, solutions and symptoms with other care providers participating in the study. We will be attending many appointments in many locations in the Northeast with Jack over the next several months in an effort to reduce his seizures, find out about genetic therapies that he may qualify for, and continue his already intricate care-plan.

He is 5 years old now and we recently received the news that comes along with his diagnosis: this is not a curable disease and will remain a life-long issue. He has a very high probability of having the onset of pre-adolescent dementia. We aren’t sure what his life expectancy will be, but for now we are focused on maintaining a positive outlook, doing what we can to improve his quality of life in any way and getting him to all his scheduled and unscheduled therapies and hospital visits. However, this creates a whole new approach to his care in general and increases the amount of time, care and support he will need for as long as we have him. Our faith is strong and we know through God all things are possible. Prayers are definitely needed for him and our family. We will never stop fighting for our Jack.

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Please continue to pray, share this page, and consider donating. Any funds raised will be used for Jack's uncovered medical expenses, travel to other locations for his extensive medical care, and to purchase equipment and supplies that will enhance Jack's quality of life. Thank you for your ongoing prayers and support.