“We cannot forget the stories of individuals who are no longer with us.”
She was a happy child. She loved art. Japreet’s condition was a complete mystery. With a family that had no history of serious medical issues, Japreet’s physical health was strange and scary. When she was eight, she was suffering fevers three or four times a year. She caught pneumonia and was in and out of hospital. They discovered that Japreet had a STAT 1 mutation, a primary immunodeficiency. Japreet went back to hospital after getting shingles. STAT 1 was targeting her major organs. Her bloodwork revealed that she had zero white blood cells. It seemed like the only option for Japreet’s improvement was a bone marrow transplant. She went through a week of intensive chemo. She was ill after the transplant. She was vomiting regularly and had to be admitted to ICU with a breathing tube. Her health deteriorated. The HLH was back and taking over her body. The family was told that her organs would start to fail. An experimental medication from England was brought over to wipe out the HLH, but it proved useless. First her liver started the fail, then her kidneys, and then her heart. On October 31st, 2013 Japreet passed away. Japreet’s family created Japreet’s Art Scholarship with Immunodeficiency Canada. You can read her full story on the website.
October 29, 2001 was the happiest day of my life. It was the birth of our beautiful daughter, Brooklyn. By two months of age, Brooklyn had a clear, runny nose but her doctor assured me there was nothing to worry about when she received her first immunization shot. Then there was a series of hospital admittance as Brooklyn took ill and developed several cases of pneumonia each one worse than the previous. On April 9, 2002 at five months and eleven days old, we removed Brooklyn’s breathing tube and our sweet, innocent baby passed away in our arms. We later learned that Brooklyn had Severe Combined Immune Deficiency. Brooklyn’s full story can be found on the Immunodeficiency Canada’s website
Braxton Andrew McGonigal
Braxton Andrew McGonigal born June 25, 2013. Braxton was born healthy and happy just like every baby and at 5 months old he developed a skin rash so I asked his doctor to send us to a skin pediatric specialist. The doctor took one look at Braxton, and knew what it was. On December 10, 2013 we were admitted to London Children's Hospital and diagnosed with SCID, Severe Combined Immune Deficiency also known as " the boy in the bubble". Weeks later I was given a more specific diagnoses of SCID-Artemis. I immediately started my research, to find out that Artemis was the most severe and most unknown in the world with just a very small handful of reported cases. We spent the next four months in isolation, in the hospital with Braxton. The only people in and out of his hospital room were grandma grandpa and mommy. It was painful and isolating to see my little boy growing up in a hospital room all alone with no other family or friends. On March 27, 2014 we made the 350 km drive to Sick Kids Hospital in Toronto. Leaving our home city to the unknown. In preparation for Braxton's bone marrow transplant he underwent many tests and we had many meetings regarding his protocol for transplant. Artemis SCID is radiosensitive meaning Braxton should not have any radiation materials if at all possible. I was then given three options: 1) full chemotherapy; 2) reduced chemotherapy; and 3) no chemotherapy. I chose the reduced chemotherapy because some of the chemo drugs are radiation sensitive and if we went with that protocol he could have had complications in adulthood such as, small growth and no adult teeth to name a few. On April 25, 2014 Braxton underwent his first bone marrow transplant. Success, so we thought and a few weeks later we were hit with a bomb the chimerism 80% donor cells. My heart melted. But we pressed on. Braxton became sick like most children after transplant needing many blood transfusions, he retain fluid needing Lasix and blood pressure medicine to keep his blood pressure down. You name it he needed it. Finally in September 2014 we were released to the Ronald McDonald House. After 10 months Braxton was free! We began to have many meetings with the medical team about the possibility of a second transplant finally with his chimerism reaching below 30% donor I agreed to a second bone marrow transplant. This time with full chemotherapy the most normal protocol for all SCID children at Sick Kids. In November 2014 Braxton had his second transplant. This time I was holding my breath for full 100% chimerism. Two weeks later we got the news that the second transplant was a success 100%. On January 8, 2015 we were officially released from hospital to Ronald McDonald House. I finally thought this was our time to be a normal family like mother and son on our own free of hospitals. Many firsts happen at Ronald McDonald house he crawled, he stood on his own, he was eating like a champ, but the most memorable was having him say "mommy" for the first time. On April 1, 2015 with many discussions with his medical team we all agreed it was finally time to take Braxton home to his own home and his own room. We made weekly visits to Sick Kids and by May 2015 we were finally starting biweekly visits. Finally I had a healthy boy, SCID did not beat us..WE BEATED SCID!!! Still 100% donor cells!! On May 31,2015 Braxton started vomiting in the morning and by 4:00pm after his nap I called the medical team in Toronto and advised them I was going to be taking Braxton into emergency in London as he was vomiting that day and at the very least I thought he was dehydrated and maybe needed fluids. But sadly he never came home and on June 1, 2015 he died in my arms surrounded by family and friends. Braxton is our sweet angel flying high above us!! I told him to see the world, the world is still his no matter where he is!!