A couple of weeks ago, we received an urgent application from Stollery Children’s Hospital in Edmonton. The Syed family had to relocate to Calgary as their infant daughter, Tayyaba, underwent a bone marrow transplant, which is an extremely invasive procedure that is not offered in Edmonton.
Tayyaba was diagnosed with Hurler Syndrome shortly after her birth. This disease damages the normal function of cells and tissue causing a progressive multi-system disease. Since this condition presented itself at such a young age, it also had a trickling effect on her development resulting in respiratory infections, sleep apnea, and skeletal concerns.
Due to her condition, she requires coordinated care from multi-disciplinary medical specialists and specific treatments. Every Monday since May, Tayyaba has been receiving enzyme replacement therapy for nine hours and now will be undergoing a bone marrow transplant, which her sister is a donor for. The transplant will also involve high doses of chemotherapy and total body irradiation.
This is unfortunately not the first case of this disease diagnosed in the family. In 2014, the Syed family previously lost their four-year-old son, Khalid. He also received BMT, but suffered complications which he passed away from.
Because of the family’s relocation to Calgary, dad Taj, who has been the sole provider for the family, recently had to quit his job. The costs associated with relocating the family to Calgary for 3-6 months, medical bills, as well as all the fixed monthly expenses back in Edmonton, has caused the family to become extremely limited financially.
They are currently on the waitlist for the Ronald McDonald House and have applied for the Family Support for Children with Disabilities (FSCD) but were denied twice because, at this point in time, they do not think that the Syed family fit their eligibility criteria as their daughter is too young to confirm the impact that the diagnosis has on her.
It was clear to us that the Syed family needed financial support and we drove out to meet Taj as soon as we could and deliver a cheque to the family. Thanks to everyone’s support and donations, we were able to give some relief to the Syed family with two months of rent.