Joe was four years old when he first developed symptoms of FLHLH. His mom rushed him to the hospital for a high fever. The doctors could not figure what was wrong with him, unfortunately Joe needed a spinal tap and testing. After about 4 months his symptoms went away only to return when he was 17. The doctors tested Joe again and thought it may be Lymes disease. Once again, the symptoms went away which left the doctors and his family confused and unsettled.
At the age of 22 he was finally diagnosed with a genetic disease called FLHLH (Family Hemophagocytic Lymphohistiocytosis) a condition in which a baby makes too many activated immune cells and neurological abnormalities. FLHLH may be inherited and is an autosomal recessive manner.
Joe has the XLAP 2 type.
The only cure is to have a bone marrow transplant which is extremely painful and a very long and dangerous recovery. After surgery, Joe will have a year long recovery. The risk of infection is very high and could lead to other illnesses. The side effects from the surgery include GVHD which is Graft-Versus-Host Disease. GVHD includes mouth soars, skin rash, lung-liver or organ failure and possible risk of relapse.
HOW CAN YOU HELP?
The family is looking for help with treatments, blood donations and blood banks, medications that are not covered through insurance, nurse care and home care. Joe will start the process in April. He is also seeking A+ blood immediately. Blood donation is needed ASAP. Joe's mom will most likely be the bone marrow donor and will not be able to work for about 8 months to 1 year. Male fertility preservation is important to do now since the illness can cause infertility.
Joe is now a 23 year old funny, smart, happy guy with a huge heart. The family could really use some support in anyway possible. Thank you so much on behalf of the family. Prayers and positive thoughts are welcome! Please share this email. We will be posting a progress report.
- Drew Walsh
- Donna Russell Castagliola
- Sam Madden
- Ms. Anonymous
- Tameko Cohen
Organizer and beneficiary
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