Here is their story:
"My daughter Najah is 9 years old; she loves to play basketball, read, and is always doing what she can to help others. But Najah has also been a fighter her whole life. Born with sickle cell anemia (deformed red blood cells), a disease that causes her to have a weakened immune system and severe pain, Najah has had to fight to overcome many serious illnesses throughout her life. A common cold can trigger a sickle-cell crisis for Najah, which many times had resulted in days of hospitalization and, at times, blood transfusions. The odd-shaped cells of a person with sickle cell block blood flow within the person, causing extreme pain. This is a long-standing problem Najah has had to learn to cope with and manage. Najah’s pain management during hospitalization has escalated from morphine to dilaudid, which is three to four times stronger than morphine.
In the past several months, Najah’s crises have become more frequent and now she is experiencing spleen complications due to the pooling of sickled cells during each crisis. She is at risk for stroke and other complications as a result of having sickle cell disease.
In recent years, there have been people who have been cured from sickle-cell disease through genetic therapy, via a bone marrow transplant from a sibling that does not have sickle cell. Unfortunately, Najah’s 7-year-old brother Idris also has sickle cell so neither can cure the other.
As the younger sibling, Idris has spent less time in the hospital than Najah, and when he is well, he is an energetic child, who loves to play soccer and spend time with his Cub Scout troop. But when he is sick or in pain, Idris is far from the energetic child he loves to be.
Though we have wanted to expand our family, having two children with sickle cell disease and the possibility that any future children could have the disease has been a major factor in our decision to wait. However, recently after discussing cure options for my children with their hematologist, he mentioned that in vitro fertilization (IVF) with genetic screening, could enable us to have a child born without sickle cell. In addition, he said by using matching donor markers, we could be able to cure one or both of our children.
Unfortunately, IVF treatment is not covered by my insurance. My doctor estimates all of the testing and procedural costs will be over $30,000. Nevertheless, through the encouragement of my friends and family, I am reaching out to the broader community to ask for help covering the expenses of this procedure to help my family by giving the best chance at life for all of my children.
This is the only foreseeable hope for Najah and Idris and the only way we can rest assured that a third child would be able to live a life free of sickle cell anemia. My prayer is for a strong, healthy family and that all of our children can live life free from the pain of sickle cell. Thank you for your consideration and for helping our family reach this goal. May God bless you. Ameen."
Please give generously! **This fund qualifies as ZAKAT giving for Muslim families. THANK YOU! - Donelle
**Please see additional information under the updates column.
- A R
- Zainab Kazmi
- Alina Maghrabi
Organizer and beneficiary
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