Jake's Journey with Hyper IgM Syndrome

My name is Roxanna Inman. I love these folks to the moon and back. They really need your help!!!

Go Jakie!!!!

Jake was diagnosed with a primary immunodeficiency called X-Linked Hyper IgM Syndrome when he was 5 weeks old. His parents are Chris and Megan Lachance and live in Spruce Grove, Alberta, Canada. They had his cord blood tested at birth as they knew that Megan was a carrier. This is a genetic disease that has run on Megan’s mom’s side of the family for a few generations now and females can be carriers (like her, which she got from her mom), and males can possibly get it from a carrier (like Jake). Their other son Carter does not have it, thankfully.

What this diagnosis basically means is that Jake is more susceptible to nasty bacteria, fungus, and viruses that otherwise healthy people would be able to fight off effectively. A lot of kiddos are actually diagnosed when they are intubated in the ICU from pneumonia and the docs are trying to figure out how they got so sick so fast. He also can develop cancers more easily. Jake is on oral antibiotic three times a week for the rest of his life (unless he is cured with a stem cell (bone marrow) transplant, which we will get to later on), and he also goes monthly to the Stollery Outpatient Clinic in Edmonton, Alberta for Immune Globulin IV infusions. These infusions are ‘immune boosters’ and allow him to actually be able to fight off some colds and such, which he has already had a few. These infusions come from people who donate blood, which is why blood donation is so important for people like Jake.

Jake’s disease also does not allow him to create the ‘memory response’ from regular vaccinations, which means that he has not been able to receive any of the normal scheduled vaccinations that all other healthy kids get (the 2 months, 4 months ones, etc.).

 

The only cure for Hyper IgM is a stem cell transplant. Back in May 2021, Chris, Megan, and their other son were tested to see if they were matches for Jake, and they are not. This means that Jake will now need a bone marrow transplant from a matched donor from someone in the world database. As long as he remains stable and well-managed (so far he is! ) he hopefully get his transplant after he is one year old. The Transplant Team is starting to search for a stem cell donor now! This will also been done in Calgary at the Alberta Children’s Hospital and their family will have to relocate there for AT LEAST three months full time while Jake is admitted to the hospital. This process involves him receiving chemotherapy to wipe out his current immune system, then he will receive the donors stem cells after that.

There are many risks involved and potential complications and Chris and Megan will have to take time off work for this period to be able to be with Jake in the hospital full time. They will need to stay 3 hours away from their home, and also their other son will need to be separated from them and cared for by other family. We don’t want the family to have to worry about bills and other expenses while they are trying to save their son’s life.

 

This disease has been like a family curse on Megan’s mom’s side, and we have tragically lost five males ranging in age from 6 months to 22 years of age to this horrible disease, Laurie, Norman, Ricky, Jason, and Craig, ♥️ we are choosing to remain positive and hopeful that Jake will be cured and go on to live a long healthy life like all kids should.

He would be the first one in our family to be able to do so!

Any funds raised that would be beyond their expenses needed will be donated directly back to the Stollery Children’s Hospital and the Alberta Children’s Hospital as they provide world-renowned care for sick children like Jake!

Thank you so much for considering our family and easing Megan and Chris’ stresses as they try to get their son the cure he deserves!