Dubai: The parents of an eight-month-old baby is appealing for help from UAE residents to be able to facilitate a stem cell treatment using a bone-marrow transplant.
Baby Michael Alhana Ziadah, one of the surviving twins of the couple born through In vitro fertilisation (IVF) in August 2019, was diagnosed with a rare genetic condition called Wiskott Aldrich Syndrome that results in a very low platelet count in the blood of the baby, resulting in frequent bleeding and low immunity. An Indian hospital in New Delhi has agreed to carry out a bone-marrow transplant with the father as a donor. He was found to be haplo-identical and the baby has a good chance of surviving. Without the transplant, Baby Michael has little chance of survival, doctors have told the family.
Parents appeal for help
Danny AlHana Ziadah, 31, and Rawan Askar, 25, Syrian expatriates, have appealed to the community for help.
“Ever since my baby was born, he has been in and out of hospitals. He was diagnosed within the first three months and although doctors tried to bring up his platelet count, it kept fluctuating between 35,000 and 60,000. The normal platelet count should be 150,000. Finally doctors told us the only chance of survival for Michael was a bone-marrow transplant. I was able to reach out to Dr Gaurav Khayra at Apollo Hospital in New Delhi. After a lot of correspondence and HLA matching, they found me to be a haplo identical bone marrow donor for Michael. The cost of the surgery is around $55,000 (Dh210,000). I have a saving of $20,000 so far that I have managed to set aside from my earnings since 2013. I am desperately looking to save my son’s life but I cannot do it on my own,” said Ziadah.
The family is aware in times of the COVID-19 pandemic, it is going to be tough to fly down to India.
“I am liaising with a company in India that arranges for foreign nationals in situations like mine to travel on medical visa. I will do everything in my power to get this visa and appeal to the government here to allow us to travel to New Delhi. We will have to stay there for at least three months to watch for any signs of rejection of bone marrow. My child is a sweet, lively boy and he deserves to get a chance at life. I am appealing to everyone to help me,” said Ziadah.
What is Wiskott-Aldrich Syndrome
Wiskott Aldrich Sydrome (WAS) is a rare X chromosome-linked immunodeficiency disorder that results in a low blood platelet count, triggering bleeding, eczema and blood diarrhoea in a patient. Symptoms include:
•Frequent and easy bleeding that can occur:
•from the nose.
•from the mouth and gums.
•in bowel movements.
•Frequent and easy bruising.
•A small red rash consisting of “dots” under the skin
•Eczema (atopic dermatitis)
Ground-breaking therapy using stem cell treatment by some British doctors has been instrumental in reversing this condition in children.
What is HLA matching and Haplo identical donor?
Human leucocyte antigen (HLA) typing is used to match patients and donors for bone marrow or cord blood transplants. HLA are proteins — or markers — found on most cells in your body. The immune system uses these markers to recognise which cells belong to one’s body. Usually siblings or parents are good donors in case of a transplant and a HLA match of up to 6 is considered good enough especially in case of bone marrow transplant. A donor who is found to be 50 per cent compatible in the HLA matching is said to be haplo-identical. In other words, in a haploidentical transplant, healthy, blood-forming cells from a half-matched donor, replace the unhealthy ones. The donor is typically a family member. Such transplants have a positive prognosis.
The St Mary's Catholic Church in Dubai, coordinating assistance for the family called upon the community to help in the treatment of Baby Michael. Rev. Father Lennie J.A. Connully OFM Cap said: "We are always on a lookout to help the needy and this came during the auspicious time of Lent, Danny. The family deserves our compassion and support to save the little boy. Those who wish to support this worthy cause can contact volunteers at St Mary's Catholic Church, Dubai on firstname.lastname@example.org.”