Stamper doesn’t let rare disorder hold her back
COSHOCTON – Jillian Stamper isn’t letting an extremely rare disorder hold her back.
Stamper, a 10th grader at River View High School, has Trichorhinophalangeal Syndrome, or TRPS for short.
“It’s so rare that you have to go to the National Organization for Rare Disorders to find any information on it,” said Terri Stamper, Jillian’s mom.
The family found out about Jillian’s disorder by accident when she was 6-years-old.
“I crashed my bike into a wall,” Jillian said. “I smashed my fingers and we noticed that they were crooked. We didn’t notice that before, so we went to our family doctor (in Millersburg).”
Terri said at first they thought Jillian might have juvenile rheumatoid arthritis.
“We figured out pretty quickly that wasn’t what it was,” Terri said.
The family was referred to Akron Children’s Hospital, which has a skeletal dysplasia center.
Jillian had always been on the short side, but she also was a preemie, so the family thought nothing of it. It turned out her height was due to the bone disease.
“A lot of my challenges really have been with going back and forth between the doctors,” Jillian said.
For example, on Jan. 22 she had an appointment at Akron that turned into also having to stay for a CAT scan and blood work.
“I’m also dealing with hip pains from my surgeries right now too,” Jillian said.
She had surgery on both her hips, eight months apart from each other. There also is talk of a possible third hip surgery this spring.
“My doctor is really nice and really good with kids,” Jillian said. “Hip surgery can be scary, but I have a lot of trust in him.”
Hip problems will be one of Jillian’s biggest issues.
“There is a good chance she will have to have hip replacements earlier than normal, but we will see,” Terri said.
Her hip problems, however, have not stopped her from swimming for River View.
“I just started this year,” Jillian said. “My aunt is the coach and I knew it was something I could do since it’s not such an impact sport.”
Jillian had previously competed in cross country and track, but the impact was too much on her hips.
“I knew swimming would help instead of hurt,” she said. “I’ve definitely gotten stronger.”
It’s also not just her hips that swimming is helping.
“She’s got muscles all over,” Terri said.
Jillian has enjoyed swimming this season and working on building her skills.
“It’s good, but it’s tiring,” she said. “It’s a lot of time and meters. I swim all the strokes, but I focus a lot on swimming the butterfly in the medley relay. I started swimming it at our second meet. As a first-year member it was hard. It’s a hard stroke. Usually people who have been swimming a while do it. I was working on it at practice and a veteran swimmer noticed I was doing it well and mentioned it to our coach. I’m not the best, but I’m working on getting better at it.”
Her goal next year is to finish the 100 butterfly and 200 IM (individual medley).
“Swimming is hard but it’s definitely worth it,” Jillian said.
“Jillian is not just a newbie swimmer, she is also my niece,” said Kris King, River View’s swimming coach. “I have watched her go through each recovery of these surgeries. We discussed a while ago about how swimming could help with that recovery and how she could benefit from swimming. She has been all in. She works hard and wants to get better and better. She has been able to swim each stroke not just in practice, but in meets. That’s a lot for any newbie not to mention one post bilateral hip surgeries. I have seen a new confidence and healthy pride develop in her and I am so proud of all she has done.”
Jillian’s plans right now are to continue swimming through high school and hopefully keep doing it for fun when she’s older.
“It’s a good way to stay healthy without ruining my hips like running would,” she said.
Terri had been impressed with the way Jillian has handled everything over the years.
“She is amazing,” Terri said. “When you start out young with something big like that it’s pretty scary. She’s had to go through a lot of tests, blood work, MRIs, and CAT scans. She’s never thought of herself as disabled though. She is very quick to tell you she is not a victim. She’s just a normal kid with some challenges.”
Jillian encourages other kids who might be facing similar health issues to try and look on the bright side.
“I know it’s hard, but everyone has something they are good at,” she said.
Terri also had some advice to share with parents
“Don’t be afraid to talk about what is going on with your child, but don’t let it be a focus of who your child is,” she said.
Jillian is thankful for all those who have stood by her side over the years.
“I want to thank my friends and family, especially my oldest brother (Trevis) for always giving me someone to talk to, also my parents (Trevis Sr. and Terri),” Jillian said. “My mom is always listening to me talk.”
After high school, Jillian hopes to go into the medical field and study at the University of Cincinnati.
“I look up to a lot of my doctors,” she said. “Right now, I’m in-between wanting to go to med school and nursing school.”
Category: High School, Sports
