As a baby, Carson’s skin was exceptionally soft. He could get a cut simply by running a finger over the seam of an inflatable toy. He also didn’t walk until he was 18 months old and while most kids fall and get up while learning, just a small tumble would require stitches for Carson. After many episodes requiring stitches, his family decided to consult with a dermatologist.
At just 23 months old, Carson was diagnosed with a rare and complex genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS). The condition causes fragility in the skin’s collagen with patients often experiencing complications with hyper-mobility, easy bruising, tearing of the skin, detached retinas, dislocations, and joint pain.
For Carson, small bruises can turn into bursitis where the bruise falls off and leaves an open wound that can take up to six months to heal. He also can’t walk for long periods because of sore joints and his aorta is enlarged in two areas preventing him from repetitive heavy lifting or exertion. In addition, Carson was diagnosed with Vestibular Migraines which is a form of vertigo that affects his balance and causes dizziness that makes him feel like he is falling or spinning even when sitting still.
Thankfully, since 2019, a team of specialized healthcare professionals at Jim Pattison Children’s Hospital has been by Carson’s side, helping him to manage and explore low-impact activities that enable him to play, be active, and stay healthy. They also provide ongoing pain management, physiotherapy, and psychological support, while also giving his family information and support.
Carson’s life is different from other kids his age, including not playing contact sports or rough housing with his friends. Yet he never complains, is extremely caring about others, and has many favorite activities – like swimming, playing video games, and using his virtual reality headset with his friends. For Carson, every day is about making it a fun day.
Thanks to your support towards research and discovery, and through foundations like the Jim Pattison Children’s Hospital Foundation, children’s hospitals are exploring new frontiers in genetic disorders to make life better for kids like Carson everywhere.
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