The first six months of his young life have been a roller-coaster but “Mighty Hudson” Cowie is back home in Alberta after an experimental gene therapy procedure in Tennessee was successful.
“It’s been so long since we’ve got to see our family, our friends,” Hudson’s dad Ian said. “Even just to be able to show him off to everybody. We’ve spent the last six months seeing how amazing of a little guy he is.
Hudson was diagnosed with Severe Combined Immunodeficiency (SCID) within days of his birth on June 23. The condition, known to many as “Bubble Boy Disease,” prevents his body from fighting illnesses. Essentially, he didn’t have an immune system.
In August, Hudson was accepted into a gene therapy program at St. Jude Children’s Research Hospital in Memphis. A medical team removed some of his bone marrow cells and replaced the faulty gene with a corrected one. The cells were placed back into his body through an IV.
“They took his own bone marrow out — in his bone marrow, he’s got hematopoietic stem cells. They were able to take those cells and modify them to create a product, a repaired version of those cells, and then give them back to him,” Ian told Global News on Monday.
“Medicine is amazing. We took a chance on science and we’re so glad that we did. It’s amazing what they’re able to do.”
Ian and his wife Hayley were weighing two options for their little boy: using donor cells or a revamped version of Hudson’s own cells. They decided on the second, which meant a trial at St. Jude’s.
“It didn’t rely on a donor, it was the new up-and-coming medicine, the existing results for gene therapy were already incredibly promising and then, as an added bonus, it had substantially less chemotherapy requirements.”
WATCH: (Sept. 9, 2019) A Morinville baby with a rare disorder received a life-changing procedure in the U.S. Hudson Cowie’s parents give Su-Ling Goh an update on therapy for his immune system.
“It honestly sounded too good to be true,” Hayley added.
“With bone marrow transplant, we heard of graft versus host disease, where it’s somebody else’s cells and they can reject them. With gene therapy, having his own cells, he wasn’t going to reject them because his body already knows them.”
A few months after the transplant, they started to see results: Hudson’s first T-cells, a type of white blood cell that’s a key component of the immune system.
“From three months, it exploded. At four months, it was even more T-cells. The growth was exponential,” Ian said.
“I think that’s the thing every doctor hopes to get to say to their patients one day: ‘He’s cured.’ And the day that we left Memphis, she said that. She said: ‘He’s cured.’
“We squealed like little schoolgirls. It was very exciting.”
Hudson’s immune system right now can be compared to that of a newborn baby.
“As he’s introduced to small bugs, it’ll just keep growing and growing and be normal,” Hayley explained.
There are still unknowns, but the family is very hopeful.
“He was Patient 12 on the trial and from what we were informed, everyone on the trial has done tremendously well,” Ian said.
“I just think it’s amazing,” Hayley added. “It’s amazing that we were the first ones who got on newborn screening and that this trial was even available for us. It just seems that everything completely lined up.
“I feel like everything has just fallen into place to get him cured.
“The treatment is just amazing. Our doctors are brilliant, it’s just all incredible and he’s doing great.”
Hudson was one of the first babies to be screened for SCID through a new program. Since SCID was added in May 2019, the Alberta Health Services Newborn Metabolic Screening Program has screened over 34,000 newborns and has diagnosed four cases of SCID.
While very much welcome, being home is still a big change for the Cowies.
“I’m still processing, even now,” Hayley said. “It’s nice to go see people but we were in isolation for so long that it doesn’t just flip all of a sudden. I know we’re still really protective and we can hear a cough from miles away.
“It was surreal to leave but I feel like I’m still dreaming a little bit.”
They haven’t attempted any big outings yet — especially given it’s flu season — but they have been able to go to some family dinners.
“It’s an adjustment for sure, but a good adjustment,” Hayley said. “He loves people… He’s always just smiling and playful… he’s just happy.”
The Cowies will be back in Tennessee for one day for a checkup this weekend. Hudson will have another checkup with the St. Jude’s team next month. He’ll have followups at least once a year until he’s 10 years old.