At 13, Ladner’s Jessica Gentle has endured more medical procedures than one can ever imagine.
She was diagnosed at birth with mucopolysaccharidosis, or Hurler syndrome, a genetic enzyme disorder - one of several forms of MPS - that affects only one in 25,000 newborns. It’s genetic, degenerative and, for the moment, incurable.
Jessica has had 27 surgeries since birth, including a bone marrow transplant. She has had hip reconstruction surgery on both hips, multiple hand and finger surgeries and corneal implants in both eyes. She has metal in both knees and both feet to correct knock knees and turned out feet. Her adenoids and tonsils have been removed to cure severe sleep apnea, and she wears hearing aids in each ear.
Her mom Jenifer marvels every day at the strength Jessica shows in the face of adversity no child should have to endure.
“She is a very happy, joyful child,” says Jenifer. “The hardest part is that she has this normal brain, but a body that just won’t cooperate, so it’s hard for her. She is very aware of what is going on and that she can’t do some things that others can, but she has a great circle of friends and has been very well supported.”
As it is a rare disease, education is so important, which is why the Gentles continue to tell their story.
“The MPS Society provides a very important function in that regard,” adds Jenifer. “They are also there to support families, which when families have new diagnosis that is so important that they have someone to reach out to.
“When Jessica was first diagnosed we had never heard of MPS, but we saw that it was quite horrific and all we saw was a dire future. In those dark days we reached out to the society to get that hope. One of the parents reached out to us and emailed us a picture of their daughter on her first day of school, so that gave us hope that maybe Jessica will someday be well enough to go to school. That was the hope that made us go on.”
Jessica loves travel, dance, music, having attended the Taylor Swift concert in Seattle Tuesday night. She attends Holly Elementary and in September will go to Delta Secondary.
When asked how she stays positive, Jessica says, “I just think of all my family and friends and how they support me and that helps me get through anything.”
On Saturday the family will be a part of the 15th annual Ignite Hope Gala – RARE with all proceeds going to the Canadian MPS Society to help advance research and support families like the Gentles.
You can learn more about the gala at: http://www.mpssociety.ca/raregala2018/.
