Urgent help for Subia's Bone Marrow Transplant(TAR Syndrome)

Dear all,

I am making an urgent appeal regarding the terrible medical condition of my sweet precious little niece Subia born on 19.03.23 with Thrombocytopenia-absent radius (TAR) syndrome as you may know, is a rare genetic disorder characterised by absence of the radius in both arms and a reduction in the number of platelets. Due to a reduction in platelets, she has been facing major complications, bleeding episodes since birth, and every 2/3 days, she needs blood transfusion. She has an extremely weak immune system and has difficulty digesting milk or food properly, which is causing her to lose weight instead of gain.

She needs urgent medical care to minimise the risk of bleeding episodes. Platelet transfusions are the first line of treatment that she is currently receiving. Since she has persistent thrombocytopenia/ excessive bleeding complications, the Bone Marrow transplant is the next step. Bone marrow transplant is a procedure that infuses healthy blood-forming stem cells into the body to replace bone marrow that’s not producing enough healthy blood cells. The bone marrow transplants may use cells from a donor, which means her siblings, or a matching donor, must go through the procedure, too.

The lack of specialised resources and expertise has put her life in even greater risk, there has been days where she has been desperately fighting for every breath due to non-availability of blood at the blood Bank, it has been such a dilema for the parents to find and request for matching blood from family, relatives or friends. There have been days when the doctors have been unable to find her veins. She has holes in various parts of her body. She has bruises, cuts, and plasters over her body. Witnessing such critical moments where you see your child fighting for every breath with the bruises and cuts is a deadly situation for her family.

Facing such difficulties/challenges, poverty, and lack of professional medical care for such conditions, her father still works tremendously to provide for his children (4 girls and one boy aged 8 years old). However, despite their hard work, it could never be enough to meet the cost of her blood transfusions and bone marrow transplant procedure, which will cost around £80.000,

However, in certain cases, it can be much higher depending on circumstances. The funds will be used to cover the cost of the transplant, medical fee, travel visa, tickets, accommodation, hospital stay, maching donor fee, travel/transportation, after recovery cost and other expenses. This requires financial support that her family alone can not afford without your help due to their limited financial means.

I urge you to join me in this fundraising and extend a lifeline of hope for Subia’s health by making this fundraising a success to cover the staggering medical expenses associated with TAR syndrome. Your contribution, no matter how small, has the potential to ease her suffering, together, we can make a difference.

with deepest gratitude,

Safatullah Badar