Jack Pierce and Family Fund

October 22, 2011. Jack is not doing too well this Autumn. He crawls exclusively. He cannot grab items, but rakes his hand over them to grab them. His vision is starting to fail, in a cataract style. Glasses do not help and he will not wear them. It is believed he is having seizures at night, and he struggles to breath periodically. These are his bad times. In his good times, he is still "smiling Jack" He is struggling to say, "I love you Mommy" but does say "Mommy" and "Love". He knows and loves his family, and enjoys watching T.V. It is very cold outside Chicago, and the winds are blowing, so the family stays in most days. Just this last spring, at Easter, he was walking around in the grass, collecting Easter Eggs.

Jack just turned two in May.  He is an adorable and very sweet child, who is happy all the time.  He loves Disney movies, and playing with his sister Amber.  Jack has some health issues that were discovered when he was young, the worst of which was Asthma.  Until now…  

Jack’s parents were recently informed that  Jack may have Cerebral Palsy and other neurological disorders.  Not certain, further testing was required.  The tests were started and results were not known for almost a month.  He is on many medications that do not have generics available, so the expenses are climbing quickly. Jack's parent's learned the week of June 12th that Jack most likely has Leigh's Disease. 

Leigh's disease is a extremely rare disorder, and there is currently no cure, nor effective treatment. It usually affects infants under two years of age, but, in rarer cases, teenagers and adults as well.  Leigh's disease, also known as Subacute Necrotizing Encephalomyelopathy (SNEM), is a rare neurometabolic disorder that affects the central nervous system. It is currently treated with thiamin (vitamin B₁), but even with treatment, infants rarely live longer than two or three years after the onset of the disease.

Though there is no cure for Leigh's Disease, this is still an early diagnosis, and we are all hoping a different diagnosis will be brought forward.

Children's Hospital in Los Angeles is providing excellent care, but the co-pays are stacking up, as are the transportation expenses.  We in MOMS Club are trying to help the family by relieving them of some of the financial burden.  

The Moms of MOMS Club are asking your help.  We are holding fundraisers all summer and trying to reach out to the community for help.  If you can help this family, please send a tax deductible donation to the Simi Valley Community Foundation as listed to the right, or contact Josie Hirsch, Jack Pierce and Family Fund Co-Chairman, from MOMS Club of Simi Valley East at (805) 244-5386.