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Devon and Matteo's Journey with WAS
0% complete
$5,390 raised of $10K
49 donations
**Updated September.
Devon (older brother) and Matteo were born with a very rare disease called Wiskott-Aldrich Syndrome or WAS. It is a genetic autoimmune Deficiency disease that affects about one in every 250,000 males. It affects the white blood cells making patients susceptible to infections as well as reduces the size and number of Platelets causing very easy bleeding.
The only cure for the disease is a bone marrow transplant without it, the average life expectancy is between eight and 15 years old.
Mateo got really sick in March 2019 and wasn’t improving and had to undergo an urgent bone marrow transplant with dad as a half matched donor. His transplant took place about two hours away from home. He was there for about two months with Mom while dad stayed home with the other four siblings and the help of grandparents. Devon is on a transplant list and is waiting for a match.
Since transplant Matteo has been hospitalized twice, once for a bacterial blood infection and the second time for a double bacterial blood infection which we determined that the infection was in his broviach lines and they were removed. He is currently working on weaning off meds.
Devon had to take a trip to the hospital during Matteo’s stay due to high fevers and viral infection which attacked his platelets and he’s been hanging at low levels around 20k for a few weeks. He ended up being hospitalized this September due to a bad stomach virus that left him wiped out and extremely dehydrated, once again knocking out his platelets. We are currently on track of preparing for transplant soon if his platelets don’t bounce back.
We are constantly in and out of the hospitals nowback on weekly visits with Devon. As a family we would greatly appreciate any donations to help go towards food , possible lodging, gas, bills, childcare, etc. It’s been very tough making ends meet on only one income for our 7 person household as one of us has to stay home with the boys.
Please keep our boys and our family in your prayers as we go through this tough journey.
***For more info on Wiskott-Alsrich Syndrome visit wiskott.org
***For more info on becoming a bone marrow donor visit bethematch.org
Devon (older brother) and Matteo were born with a very rare disease called Wiskott-Aldrich Syndrome or WAS. It is a genetic autoimmune Deficiency disease that affects about one in every 250,000 males. It affects the white blood cells making patients susceptible to infections as well as reduces the size and number of Platelets causing very easy bleeding.
The only cure for the disease is a bone marrow transplant without it, the average life expectancy is between eight and 15 years old.
Mateo got really sick in March 2019 and wasn’t improving and had to undergo an urgent bone marrow transplant with dad as a half matched donor. His transplant took place about two hours away from home. He was there for about two months with Mom while dad stayed home with the other four siblings and the help of grandparents. Devon is on a transplant list and is waiting for a match.
Since transplant Matteo has been hospitalized twice, once for a bacterial blood infection and the second time for a double bacterial blood infection which we determined that the infection was in his broviach lines and they were removed. He is currently working on weaning off meds.
Devon had to take a trip to the hospital during Matteo’s stay due to high fevers and viral infection which attacked his platelets and he’s been hanging at low levels around 20k for a few weeks. He ended up being hospitalized this September due to a bad stomach virus that left him wiped out and extremely dehydrated, once again knocking out his platelets. We are currently on track of preparing for transplant soon if his platelets don’t bounce back.
We are constantly in and out of the hospitals nowback on weekly visits with Devon. As a family we would greatly appreciate any donations to help go towards food , possible lodging, gas, bills, childcare, etc. It’s been very tough making ends meet on only one income for our 7 person household as one of us has to stay home with the boys.
Please keep our boys and our family in your prayers as we go through this tough journey.
***For more info on Wiskott-Alsrich Syndrome visit wiskott.org
***For more info on becoming a bone marrow donor visit bethematch.org