Severe Combined Immunodeficiency. SCID. The ‘bubble boy’ disease. It’s fatal if not picked up and treated in the first year of life.
It’s a difficult to diagnose and is usually not suspected unless a child is seriously and continuously ill, at which point it may be too late for treatment.
SCID took the life of our first son, Zakariya, at 15 months of age in 2014. He went undiagnosed for 13 months and by then he had received his 1 hear vaccinations; they were essentially fatal in his condition. He never made it to his transplant date, which was also delayed due to unavailability of a matched donor, despite a worldwide registry search for weeks.
SCID isolated our second son, Ismaeel, from birth until he was 2 years old. We converted our home into a bubble, kept him cooped up inside and away from other people to protect him from the risk of virus or illness. We washed our hands and sanitised everything. All. Day. Long. We isolated ourselves so we wouldn’t bring any germs home. Our daughter didn’t go to school or see other kids for a year and I didn’t leave the house, except for hospital visits. We hope and pray a stem cell transplant will provide a cure, however in itself it is risky, with a list of potential complications.
In the bottom right of the picture is dad donating his cells. It may not seem like much, but in the top left picture, this 40 ml pink liquid comprise of millions of stem cells harvested from peripheral blood. The harvesting took 6 hours and the cells were then processed by specialists. These were given as an infusion to Ismaeel.
It has been a long challenging journey. We waited over 3 years to know if the transplant was successful in giving him a complete, reconstituted immune system. Although we came out of isolation after 2 years, it was a long process getting comfortable with going out into the world.
We have learnt now that his immune system has not fully reconstituted, which means that he started monthly immunoglobulin infusions to boost his defence. But we are so grateful to see him grow and thrive, and feel very blessed watching him approach his 4th birthday.
We are so thankful for all the blood and plasma donors that make his immunoglobulin infusions possible. We also would like to raise awareness of the need for bone marrow donors, particularly from non-caucasian backgrounds as they are severely underrepresented in the bone marrow donor registries worldwide. These donors are amazing (often anonymous) selfless strangers giving the most incredible gift that keeps on giving!
