In December 2023, Ashley and Chris were shocked to learn their then three-month-old son, Ellis, had Wiskott-Aldrich Syndrome (WAS), a rare genetic condition that affects a child's immune system, blood cells, and skin.
Ellis, a healthy baby boy at birth, started showing signs that something was not quite right when he developed an eye infection at 10 days old and, not long after, a bacterial infection.
Blood tests done at the time revealed that Ellis’ antibodies, which help fight infections and disease, were lower than they should be. He needed to begin IVIG (Intravenous Immunoglobulin) treatment to help strengthen his immune system. Further genetic testing confirmed that the cause of his illness and low antibodies was due to having WAS.
Because WAS can make it difficult for a child's bone marrow to produce platelets, making a child prone to bleeding, Ellis’ IWK care team recommended he receive a bone marrow transplant, which would be done in Toronto, once they found a matching donor. The best chance of finding a matching donor is through siblings, but unfortunately, his sister, Layne, was not a match.
While waiting for a donor, Ellis continued to receive IVIG treatment, went for regular checkups, and received many medications.
Fortunately, in May 2024, Ashley and Chris received the call that a matching donor was found.
Ashley shared, “We were so thankful and relieved that a donor was available. We were scared. How would life look? How were we going to navigate being in Toronto for three months?”
At 11 months old, Ellis and his parents flew to Toronto for him to begin the process of having a bone marrow transplant. As the first step of the stem cell transplant, Ellis received chemotherapy to kill any unhealthy cells in his body and to prepare space for the transplanted cells before his donor cell infusion.
Ellis’ transplant was a success, and he recovered well. After spending 99 days in Toronto, 38 of them in the hospital, Ellis and his loving family returned home to Nova Scotia.
Not long after his transplant, Ellis developed Graft-versus-host disease (GVHD), a complication that can happen after a bone marrow transplant. It occurs when the newly transplanted immune cells (the "graft") recognize the body (the "host") and mistakenly attack the healthy cells. As a result, he must take medicine to suppress his immune system and prevent it from attacking his body.
Infections or illnesses, such as coughs or ear infections, in immunocompromised children often require emergency department (ED) visits and additional tests and treatments. Ellis also suffers from eczema (a chronic skin condition), and he has congenital scoliosis.
Parents who have a sick child know all too well the emotional impact it can have on the family. Ashley’s emotional distress from the first admission resurfaces with every visit to the ED, and the family must lean on the grandparents to care for Layne as they go to and from the IWK during medical emergencies.
“Having your world turned upside down, going in thinking it was a simple checkup to having a major diagnosis was huge,” Ashley shared. “We are so lucky to lean on grandparents and my sister for support.”
Ellis, who is now two years old, recently started daycare and loves it. Ashley and Chris’ biggest wish is for Ellis to have a healthy and happy childhood. They are incredibly thankful for the IWK care team that saved Ellis’ life and for the care, compassion, and resources available so close to them.
