Hope for Hudson

Hudson Cacka, age 3, has been diagnosed this past May 2018 with a rare immune disorder. Since birth he has had numerous health issues starting with pancreas troubles, followed by intestine and kidney problems. In 3 years Hudson has been hospitalized twice, has had 2 endoscopies, 1 kidney biopsy, numerous trips to the emergency, and countless visits to UofA lab, and Edson’s local lab for blood-work. Finally after searching and trying to find the real underlying problem, the doctors have diagnosed Hudson with IPEX Syndrome. (immunodysregulation polyendocrinopathy enteropathy X-linked syndrome) IPEX is a rare disease linked to the dysfunction of the transcription factor FOXP3. In other words, one of the 220+ immune genes in Hudson’s body (FOXP3) has a mutation causing his immune system to attack other organs after it has fought off viruses, the common cold, flu etc.

Some facts about IPEX

*affects 1 in 1.6 million

*only affects males

*one 1 case study done, as first case was diagnosed in 2001

*left undiagnosed or untreated, survival past age 2 is unlikely

*most children are diagnosed by 14 months

*symptoms appear almost immediately after birth

*only ~ 150 known cases worldwide

There two options that Hudson’s parents, Steven and Louise, are left with to address his disease.

First is having Hudson on immunosuppressants to dampen the immune response. This has consequences. Once Hudson has the cold etc, he fights it off a lot slower then normal and has to be kept a close eye on. If he spikes a fever at any time, (even without a cold) it means an immediate trip to the Stollery emergency to be monitored.

Second option is a cure. This is in the form of a bone marrow transplant. So far in this process,Hudson’s immediate family (parents and sister) have been tested for matches. Results are still to be determined. His baby brother, (Oliver age 3 months) has yet to be tested due to weight requirements. If no match within the immediate family are found, then the family will be looking for a donor for Hudson. When a donor is found, the whole family will be moving temporarily to Calgary, where they perform the transplant procedure for IPEX patients. The family could be staying in Calgary anywhere from 6 months to a full year.

For now, Hudson is stable and in good health. He is a happy, strong-willed, caring and loving little boy that had a tough life so far. He is a strong as they come.

If you wish to be tested and enrolled in the donor system, please visit onematch.ca

From there you can fill out a questionnaire, register and have a test kit mailed out to you containing a swab. Simply swab the inside of your cheek, and pop it back in the mail. If you are a match for anyone who is waiting for a transplant you will be notified. Steven and Louise strongly encourage anyone to be tested, you could really save a life.

All money raised will go towards finding Hudson a donor through donor drives and helping support the family while Hudson is receiving his transplant, all money not used by the family for Hudson will be donated to a suitable individual or charitable organization related to IPEX, Bone-marrow transplants or the Stollery Children’s hospital.

Please visit Hope for Hudson on Facebook!

https://m.facebook.com/hopeforhudsonc/