Finding Our Normal: Sully’s Magic and Resilience

Every day in our house feels like we are against a ticking clock. I live in fear every day as his mum that it could be our last, or that he could become poorly so very fast. We live every day like we are in a pandemic for the safety of our son, which means we are restricted, limited, and isolate ourselves from a lot of others. Only my husband, myself, or the staff at Julia’s House children’s hospice are able to care for him due to his 24-hour medical needs.

Despite the anxiety, we try to enjoy every day and add a little Disney magic whenever we can. Sully is best described as magic; he loves Toy Story, Monsters Inc., and Peppa Pig. His best friend is his big brother Reuben, and now he has a new baby sister to love too. When Sully received his diagnosis at 11 months old, he wasn't reaching his milestones, but once he began the ketogenic diet, our lives changed. On day two of the diet, he was finally able to roll over for the first time. If it wasn’t for tubies and the ketogenic diet, I don’t know where we would be.

Joining the Freya Foundation family has been one of the best things that has happened to us on Sully’s PDH journey. At our annual meet-ups, it’s the one time of the year that we as a family can go out in public and feel less eyes on us. We aren’t the only tubie family; we aren’t the only ones with a wheelchair, feeding pump, or medical bag. We feel a sense of normal. The support from Kelly this year during my latest pregnancy was just what I needed, especially as it's been a challenging year with our newborn also having the PDHA1 gene. Thanks to the Freya Foundation, you are not alone.