Oliver Danger's hope fund
Donation protected
Oliver Danger is one year and four months old. when he was almost exactly one year old he was given a terminal diagnosis; Sanfilippo Syndrome. It's a type of storage disorder. We were told he would live to age 12-14.
His brain would stop developing between age 2-3. At 4-5 his brain would start backsliding into infancy. By age 10 he wouldn't be able to walk or talk. And he would die between ages 12-14, most likely either from starvation or suffocation. We were told this is NOT just a possibility, but that my brother was GOING to die.
Then one of the doctors at Seattle Children's Hospital, (who had lost a child himself) told us about Duke University in North Carolina and the amazing things they were doing there with stem cells. We got in contact with them and within two weeks we went from no hope to realizing oliver might have a chance yet. My mother and father would have to relocate across the country for (6-9) months. oliver would have to go through many things, including chemotherapy and not leaving the hospital for AT LEAST two months; being confined to a sanitary room.
The chances of him surviving this are high, in the 90% and were very hopeful but also very scared. For our family this wasn't a choice. It was either watching him die slowly for many years or giving him what seemed like the one chance he had. But close to none of this is covered by insurance. So most testing and treatment will have to come from out of pocket. Not to mention travel, and where my family will be staying for months. And i will be staying at our home in Washington State, miles away from my family.
Needless to say, before any of the money strain this is going to be hard on our family. However to us, it matters more that everyone is just more informed about storage disorders. Anything you can give obviously helps, but if you could just share this around itd mean a lot.
His brain would stop developing between age 2-3. At 4-5 his brain would start backsliding into infancy. By age 10 he wouldn't be able to walk or talk. And he would die between ages 12-14, most likely either from starvation or suffocation. We were told this is NOT just a possibility, but that my brother was GOING to die.
Then one of the doctors at Seattle Children's Hospital, (who had lost a child himself) told us about Duke University in North Carolina and the amazing things they were doing there with stem cells. We got in contact with them and within two weeks we went from no hope to realizing oliver might have a chance yet. My mother and father would have to relocate across the country for (6-9) months. oliver would have to go through many things, including chemotherapy and not leaving the hospital for AT LEAST two months; being confined to a sanitary room.
The chances of him surviving this are high, in the 90% and were very hopeful but also very scared. For our family this wasn't a choice. It was either watching him die slowly for many years or giving him what seemed like the one chance he had. But close to none of this is covered by insurance. So most testing and treatment will have to come from out of pocket. Not to mention travel, and where my family will be staying for months. And i will be staying at our home in Washington State, miles away from my family.
Needless to say, before any of the money strain this is going to be hard on our family. However to us, it matters more that everyone is just more informed about storage disorders. Anything you can give obviously helps, but if you could just share this around itd mean a lot.
Organizer and beneficiary
Lillyana Morrison
Organizer
Marysville, WA
amy Morrison
Beneficiary
