Hudson Cowie is happy, hungry and playful, just as any other three-week-old baby should be. He has bright eyes, a full head of hair, and a healthy cry. His parents Ian and Hayley say that you would never know by looking at him that he has severe combined immunodeficiency, often shortened to SCID.
Some people call it the ‘Boy in the Bubble’ disease. It means that he has zero immunity.
“In a lot of the reading that we've done about the condition, that's actually a common difficulty with people understanding this illness, being that you look like you've got this perfect, normal, healthy kid. There are absolutely no signs that this disease exists,” Ian said.
“That can actually be what poses one of the greatest issues with this disease, with relation to areas of North America that don't include the SCID screening on the newborns: there's no evidence of the disease. Traditionally, kids don't get sick early in life because they actually retain a lot of their immune system function from the maternal immune system.”
In some ways, the Cowies are pretty lucky to have found out the news as soon as they did. Hudson was born on June 23 and it only took five days for the results of his newborn metabolic screening blood test to come back. On top of that, SCID was only added as one of the list of more than 20 conditions the test screens for on May 31. Ian said that if he was born a month earlier, the family would only have learned of this condition when he would have become quite ill with an infection.
The good news is that he’s doing fine and is even at home with mom and dad, albeit in isolation to prevent him from being exposed to germs and illnesses.
“I think that Hudson has been dealing with it better than we are. Him being a newborn, he doesn't know anything different because he just has his parents at home all the time. We're having difficulty with it as that we just want to show him off to the world and we're just stuck on house arrest. We would do absolutely anything for him and it will hopefully be just for these next nine months,” Hayley said.
The great news is that SCID is treatable with the right bone marrow donor.
The next step involves further blood testing to determine Hudson’s human leukocyte antigen, or HLA, type. It should take a month for the lab to provide those results, after which the Cowies can get Canadian Blood Services to search through its bone marrow registry to look for a match on its list of donors. People can get on the list by having their cheeks swabbed, nothing more.
Just like any other similar program, the more people that are on the list, the better the chance there is of a match. Hudson needs to find a match within the next few months for successful treatment.
The family has already started working to bolster the numbers of potential donors. Canadian Blood Services requires donors to be either males of any ethnicity or non-Caucasian females between the ages of 17 and 35.
“Every single person that registers to donate, it's one more chance that they could be a match for our boy,” Ian said.
There are hundreds of people like Hudson who are waiting to find their match. Both Hayley and Ian have already checked in with the OneMatch bone marrow registry to enquire about becoming donors. In an ironic twist, they both work in healthcare but neither previously realized how easy it was to sign up nor that they could even be bone marrow donors.
“This was a huge eye-opener for us, too. We don't know why we haven't been on the registry for the last however many years. It's just something we didn't really know about,” Hayley said.
“We didn't know about it. Well, we know now. We both filled out the applications and we're going to register to be donors as soon as we can,” Ian continued.
To help encourage others to do the same, they have set up a Facebook page called Mighty Hudson and will be setting up a registry booth at this Saturday’s First Responders Rodeo at the Kinsmen Rodeo Grounds. It’s open from 11 a.m. to 5 p.m. to rodeo attendees only ($15 gate admission). Another will be set up for the general public from noon to 8 p.m. on Sunday at the Edmonton Northwest EMS Station at 13443 149 St. and again on Tuesday, July 23 at the Stony Plain EMS Station.
People can also visit onematch.ca to find out more or to register online to get a questionnaire and cheek swab kit mailed out.
