KNOXVILLE, Tenn. (WATE) — A 5-year-old Knoxville girl suffering from a rare syndrome has been approved to receive a multi-organ transplant. A surgery performed in Ohio could be life-changing.
Jordyn Hall has battled Megacystis microcolon hypoperistalsis syndrome (MMIHS) for most of her life. This is a severe disease that affects the muscles lining the bladder and intestines, impairing the contractions of the muscles that move food through the digestive tract. And it prevents her from living like a normal child.
She was diagnosed with MMIHS when she was 4 months old.
“It’s so rare. I think about 230 people have been diagnosed with her disease. It caused a lot of fear, a lot of hospitalizations and things like that,” said her mother, Stella Hall.
For Jordyn, this means she won’t be able to go to school, play, or swim. Most of that is due to her Total Parental Nutrition tube.
“She’s on TPN so she can’t run around the park or play as much as she wants,” Hall said. “It’s difficult for her to live on her TPN for the rest of her life, so she definitely needs a transplant.”
Recently, Jordyn and her family learned that she is a candidate for a multi-organ transplant. Her mother said it was a roller coaster of emotions.
“Oh, I was scared. I was scared and excited at the same time,” she said.
The surgery can be life-changing, but it means Jordyn and her mother will have to leave Knoxville immediately for the procedure and then stay in Ohio for at least a year.
“It could be any day of the week, even 3 a.m.,” Hall said. “It could happen at any time, so we don’t know how long it will be before she gets the call.”
This raises many questions for her family, including how they will be able to make ends meet outside of medical expenses, but her mother says she is a fighter.
“She’s such a great kid. She just wants to go to the park and play and be able to swim and do normal things like that,” Hall said. In Jordyn’s words, “I just want to swim now.”
Her mother said she has met several people with Jordyn’s condition, and one of them is now leading a normal life after a transplant.
In the meantime, she’s trying to save money for her inevitable trip to Ohio this way. Fundraising activities.
