Parents make tough decision to save sick son by having a ‘saviour sibling’
Looking exhausted and wearing a white mask over his nose and mouth, 10-year-old Mohamad Bibers Al Sabbagh is not like every other kid.
“I’m not allowed to play hard and I have to always be on a very, very strict diet and I have to be super careful all the time,” he says, through translator Maggie Amin.
For years, Mohamad has been struggling with severe idiopathic aplastic anemia, a condition where his bone marrow fails to make enough blood cells and requires him to have blood transfusions twice a week at The Hospital for Sick Children.
According to The Aplastic Anemia & Myelodysplasia Association of Canada this is a rare disorder and without a bone marrow transplant, patients can go on to “develop myelodysplasia which, in turn, can progress to leukemia.”
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His mother Iman Mouselli explains through Amin, “When they are giving him treatments and his veins won’t give anymore,” she says he looks up at her and says, ‘”Mom, I’m so tired I can’t do this anymore.'”
Again through the translator, the boy’s father Mohanad Al Sabbagh says, “As a father and as a family we’ve done everything in our capacity to help.”
“To save his life,” adds his mother Mouselli.
A stem cell transplant could be the cure he needs and although he has siblings, his parents want to give him the best chance at surviving with a perfect match by having another child.
So, Mohamad’s mother and father want to give Mohamad what’s known as a “saviour sibling.”
They plan to undergo a procedure called In Vitro Fertilization (IVF) with Pre-implantation Genetic Diagnosis Screening (PGD)
The process would involve fertilizing several of his mother’s eggs with his father’s sperm at a clinic, then genetically testing the embryos.
The embryo that’s genetically the best match would then be implanted into the mother. Months after the pregnancy comes to term, the infant’s stem cells would be transplanted into Mohamad.
The whole process is expensive, especially for a family of Syrian newcomers who arrived only about six months ago.
“I couldn’t imagine a mother wanting a treatment for her son and the only thing that is stopping her from the treatment is $20,000,” says Maggie Amin.
Amin is one of several people who have been helping the family.
She set up a GoFundMe account that has raised enough money for the procedure and to help the family with the other costs associated with caring for Mohamad.
Although Ontario now funds IVF treatments for those who meet eligibility requirements, according to Ministry of Health spokesperson David Jensen, “Pre-Implantation Genetic Testing is not covered by the Laboratory and Specimen Collection Centre Licencing Act, and as such is not covered by OHIP.”
Amin believes it should be, “not only for the Al Sabbagh family but for all other families who have to go through the IVF procedure to save their child’s life.”
CBC Toronto’s request for an interview to discuss Mohamad’s condition and treatment with Sick Kids physicians was denied.
The boy’s parents, however, did provide CBC Toronto with a letter from the hospital’s Division of Haematology/Oncology Clinic.
In it, Dr. Michaela Cada raises concerns over Mohamad’s parents’ desire to have another child to save his life, including the fact that even if IVF is successful the first time, “waiting for a sibling to obtain cord blood cells will take at least a year.”
The physician speaks to the risks associated with this, including the possibility of the 10-year-old’s health being compromised while he waits.
The letter also addresses the issues around the “ethical and financial burden on the family in undergoing this procedure and having to raise another child.”
The recommendation given was to put the boy on medication that could decrease the need for blood transfusions, then waiting for a stem-cell transplant option that would explore using an unrelated donor or one of the parents.
Whichever way they decide to go, the parents have been told that Sick Kids will support them.
One Match, a stem cell and marrow network, is urging the family to organize a campaign encouraging donors to come forward from the Syrian-Canadian community.
“It will give their son more of a chance to find a match obviously and then it will give other patients that are waiting to find a match a chance as well,” says One Match’s Toronto manager Chris van Doom.
He said at the moment there are 11 patients in Canada of Syrian descent waiting for a donor.
The Canadian registry has 408,000 people on it and “people with that background, there’s only about 5,200. So it’s a small pool to pull from,” says van Doorn.
With the help of friends Mohamad’s parents are now looking into the possibility of organizing an event to encourage donors to come forward.
Still, they are not giving up on the option to have a child to save their son’s life.
Mohamad looks forward to the day that his parents won’t have to make these tough decisions.
“I want to be well again and I want to stop the torture that my parents are seeing every day.”