Zoe is a fabulous 17-year-old living with numerous physical and
mental health challenges. She has been diagnosed with Ehlers Danlos
Syndrome (EDS), Juvenile Idiopathic Arthritis (JIA), and Chronic Pain
Syndrome, along with several other related issues, including
scoliosis, gastroparesis, mental health difficulties, insomnia, and dysautonomia.
EDS is a genetic connective tissue disorder that affects collagen
production, which means that any part of the body with collagen can be
affected. And in Zoe’s case, it does affect pretty much every one of
those parts. In particular, she deals with joint instability and other
musculoskeletal problems, forcing her to use a power wheelchair,
custom leg braces, and other mobility devices to support her independence.
Zoe’s EDS unfortunately masked the start of her JIA, a form of
arthritis in which the immune system attacks the body’s own cells and
tissues, and by the time she was properly diagnosed, the arthritis had
caused serious damage to her jaw, rendering her unable to speak or eat
for long periods. Given this and the gastrointestinal issues caused by
her EDS, she will be getting a feeding tube (g-tube) in November 2020
so that she can keep her weight up and get the nutrition she needs.
Sadly, this damage to her jaw means she’s had to give up her beloved
saxophone. She also loves to cook and bake, so it’s obviously very
hard to no longer be able to enjoy food. We’re hoping some work with a
specialized team at Mt. Sinai will give her back some of her jaw function.
Zoe is dreaming big, though, working to be as independent as possible
on her journey to becoming a climatologist. A service dog is no doubt
going to be a necessary partner, helping her to dress, stabilizing her
when she’s well enough to walk, giving her mental health support,
picking up objects, and opening and closing doors.
We’re truly grateful for everything Kingston 4 Paws has done for our
family and for any donations to help cover the tremendous cost of
raising and training a service dog. Zoe’s journey is only just beginning!
