
Help Ali Battle ITP and get treated (Rare disease
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Hello everyone my name is Hamza, Ive been good friends with hussein (Father) for a lifetime, he has always been there for me all those years when I needed the help and now I want to give back to his son. Lets all help Ali (15 years old) fight this rare disease called ITP Hussein was always on his sons side ever since he was diagnosed with Chronic Immune thrombocytopenic purpura (ITP) its a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. He was diagnosed in the year 2009 -- 5 yrs. of age when red spots began to appear under his skin all over his body. His pediatrician immediately had a CBC performed on him and he had a platelet count of 2000 meaning Ali was hemorrhaging under his skin. At that moment he was diagnosed with ITP. ITP can cause excessive bruising and bleeding. ... ITP can occur in both children and adults.The most dangerous complication of ITP is bleeding, especially bleeding into the brain, which can be fatal. However, serious bleeding is rare. The treatments for ITP can have more risks than the disease itself. Hussein has suffered all those years and sacrificed for his son to get him treated, 10 Years later continuous treatment hussein is having financial difficulties.
Tests:
a) (Bone marrow) Anatomo-Pathological Exam 12/31/2009
History of treatments In chronological order:
a) Octogam and Prednisone up to 60mg daily (IVIG) (price Per IV 1700$) 7 IV’s per week and needed every other week / twice per month with hospitalization
b) Spleenectomy 09/02/2010
c) (Holistic) Aflimone w/ vitamins-folic acid, multi vitamin, zinc gluconate, calcium
d) Rituximab chemo/3 sessions (Mabthera), 2013 @ $2,500 per session
e) Sandoglobulin (price Per IV 1700$)
f) Cellcept 1000mg daily (May 3, 2018- Oct.)
g) Revolade (Nov. 2018…cont…) (price per box about $2000/ per mo.)
Brief summary of illness:
Ali been undergoing medical treatments since the age of 5. For the first year, he was being hospitalized every other week, at a time given the IVIG treatment. After his spleen was removed in 2010, he was doing better for a little less than a year then relapsed and diagnosed with chronic ITP. We then went back to the IVIG treatments getting the same results as before the splenectomy with long-term hospitalizations. We then decided to attempt a holistic treatment, which included a special diet and change in sleep routines that was difficult for a 7 year old to follow and eventually showing little results. His Dr. then suggested Mabthera treatment (chemo) in which we were hesitant, but backed into a corner.
After the treatments there was a slight difference for approximately 6 months and then relapsed. We then gave him treatments of Sandaglobin awaiting a new drug to become available. When it was finally cleared in 2018 we began Cellcept treatments for approximately 5 months…again Ali relapsed. We then decide to attempt a new treatment outside of the country Revolade. He has to be monitored by blood tests every week
and monthly dr. visits. Over a course of 3 to 4 years. We are now seeing changes but are unable to continue his treatment due to costs of traveling and medicine expenses and unless he can get to his Dr for check-ups the prescriptions will not be continued.
The treatment is about 3200 $ per month for one year, then the doctor will reevaluate his medical condition if he should extend his treatment.
Thank you and appreciate you all for taking the time to read this! Lets all help Ali live a normal life like every other child
Organizer
Hamza Chaib
Organizer
Dearborn Heights, MI