Donation protected
- Hi, my name is Debbie and I am fundraising for my grandson Leo. His Mom and Dad are Allyson and Joe Ganzy. Leo was born, 3/10/2023, at 4 months he was diagnosed with nystagmus, a vision condition in which the eyes make repetitive, uncontrolled movements. Because nystagmus can be associated with serious health conditions, Ally and Joe began the search for answers. They did MRIs, CAT Scans, Blood Tests, Neurological Tests, the list goes on. The Drs were not able to find the cause of the nystagmus. As months went by, it was clear that Leo was delayed in reaching milestones; like sitting without support, clapping his hands, grasping objects, crawling on all 4's. Ally and Joe, desperate for answers went for genetic testing. Their worst fears and the most tragic news is that Leo at 13 months old has Pelizaeus Merzbacher Disease affecting the brain and spinal cord. PMD is a rare (1 in 200,000 in the United States) disease, it is incurable, progressive, debilitating and has no guarantee at life span. There is a chance that this sweet little boy will not walk or talk and may experience seizures, feeding difficulties and breathing difficulties. What do you do with that kind of news? You fight and that is what Ally and Joe are doing, they will go to any lengths for Leo; they will not sit back and watch their child deteriorate.
The positive is that Leo has a TEAM of Warriors at CHOP in Philadelphia and they are providing support in the way of therapies, speech and physical, to manage the symptoms. There are researchers around the country studying this disease and looking for answers. There are Clinical Trials, that Leo will be a part of. There was one trial in the UK with stem cell transplants and bone marrow transplants that showed some improvement in motor skills and communication and more testing in the Netherlands that brings us hope. Unfortunately, the cost for these procedures can reach 100's of thousands.
I am hoping to raise money for the incredible medical expenses that Ally & Joe have incurred and will continue to incur as this disease continues to progress. I am hoping that the funds raised will allow them the flexibility to travel to clinical trials and follow the treatments that we pray will come. Also to be able to provide all of the equipment, medications and therapies that Leo will need.
Leo Joseph is a happy, sweet, loving, affectionate little boy who brings us more joy than you can imagine. We will continue to love him like crazy and surround him with nothing but positivity and encouragement.
We understand that this is an incredible ask and we know everyone is struggling these days. We ask that if you are of faith, please pray for Leo and a cure.
Thank you and Blessings to Everyone,
Debbie Kaul
Organizer
Debra Kaul
Organizer
Bayville, NJ