Baby Jax Bone Marrow Transplant Journey

6 month old Jax was diagnosed with Severe Combined Immunodeficiency (SCID) on March 4. He does not have an immune system and is highly susceptible to all types of illness. Jax is currently in the pediatric unit at Saskatoon’s Jim Pattison Children’s Hospital, being treated for the multitude of viruses and infections that are a result of his condition.

His best chance at a normal life, and the only treatment for SCID, is a bone marrow transplant, which requires a match being found for donation. Jax’s sister Mia is not a match, so his options become either his parents or a match made through the national registry. Once a match is found, Noé, Claudia, 2 ½ year old big sister Mia and Jax will make the move to Calgary for the transplant. Jax will be in hospital for 4-8 weeks for the transplant and will be required to remain in Calgary for 6 months following his discharge for follow up appointments. They are looking at a minimum of 7 month stay in Calgary. Because of the nature of his condition, the entire family will have to be in complete isolation. This includes isolating from other family members and friends, until Jax has built up a functioning immune system again, in order to avoid spreading any illnesses to Jax.

Jax was born at the end of September, before there was newborn testing for SCID in Saskatchewan. This newborn testing was introduced in February. He seemed to thrive for the first 4 months while his immune system was continuing to be protected by Claudia’s antibodies. In February, after noticing weight loss and frequent vomiting, they started to investigate what was wrong, organising tests through their family doctor. After a couple of bad days, he was taken to the Emergency Room and admitted to the Children’s Hospital. He was dehydrated, with low tone, and had further unexplained weight loss. He was put on oxygen and IV fluids, and had many exams and tests done. Despite the extra care, Jax continued to decline, requiring more and more respiratory support.

After 10 days in hospital, Jax was finally diagnosed with SCID, which in his specific case means that he does not have any T cells and very few B cells. These are the two types of cells needed for your immune system to work. When a baby is first born, their immune system is immature and they rely upon their mother’s immunity. Around 4-5 months of age, the mother's antibodies start to decline as the baby’s own immune system begins to take over. This is why Jax's symptoms didn’t appear right away, even though he was born with the disease. When he received his 4 month vaccinations, instead of developing immunity, he contracted Rotavirus. This is likely what has been causing all the vomiting and diarrhea. Jax also managed to catch rhinovirus (common cold), a UTI, yeast in his bladder, Bocavirus, and PJP which is a fungal infection in the lungs that many people have but fight off easily.

Jax is making progress now that his symptoms are being managed, and he is receiving IV antibiotics and IVIG (a transfusion of immunoglobulins to boost his immune system), and is no longer requiring such intense respiratory support. Claudia and Noé are at the hospital around the clock, trading off taking care of Jax and their 2 year old daughter, Mia. They cannot receive much physical help from family due to the need for isolation and there is still a long road ahead of them. Any donations to support them through their move to Calgary and Jax's transplant is greatly appreciated, and any money raised that is not used for Jax's care will be donated to Saskatchewan Telemiracle.

Claudia and Noé also ask that if you are eligible, to please consider signing up to be a stem cell donor through Canadian Blood Services. There are so many little warriors out there waiting for a match. Signing up is as simple as registering online and then sending in a cheek swab.