Why We Support BC Children's Hospital
In June 2021, at only 5 weeks old, Jack was admitted to BC Children's Hospital, for what we thought would be a short stay to sort out a possible cow-milk protein allergy.
Over 2 months later, after many procedures, medications, blood draws, and sleepless nights (for all of us) Jack was diagnosed with intestinal malrotation and he underwent a LADD's procedure. You can read more here: https://my.clevelandclinic.org/health/diseases/10029-malrotation
When his symptoms didn't fully subside, he was finally released from hospital in October 2021, after spending 106 days in hospital. It was assumed he had PIL (Primary Intestinal Lymphangiectasia or Waldmann's Disease). This was finally confirmed in September 2023 when he was deemed old enough/big enough to go through the test to confirm this diagnosis. You can read more about Walmann's Disease here: https://my.clevelandclinic.org/health/diseases/primary-intestinal-lymphangiectasia
It's been a long journey for Jack since birth, and we are thrilled that he is currently thriving. His last doctor's appointment last year, we received some of the best news that his albumin levels are finally increasing and his other numbers are looking good, too.
Although he is still immunocompromised, he is currently doing very well and is learning how to keep himself as healthy as possible (washing his hands, eating lots of protein, and not having too many treats!)
We don't know what his future has in store for him because there is very limited information on his condition. Waldmann's Disease is an ultra-rare condition with less than 500 cases diagnosed worldwide. But we hold on to hope that he will continue to thrive and we will continue to do everything we can to keep him as healthy as possible.
We are thankful to the doctors and nurses that we were a part of Jack's diagnosis and recovery at BC Children's and for the continued care he receives from his GI team. We will continue to support raising money for BC Children's in the hope that more research can be done for intestinal malrotation and PIL.
