Emily Green will be taking on a half marathon in Roundhay Park on August 17 this year. The 29-year-old from Woodthorpe took on the challenge in an effort to raise awareness of Wolf Hirschhorn Syndrome – a rare genetic condition that her niece – Amelia, six, was born with.
Emily said that Amelia’s condition has posed a “real challenge”.
“She’s needed a lot of extra care,” Emily said. “She gets muscle weakness. When she was born she was told she wouldn’t walk. But now she can run, jump, she rides a scooter so she has sort of defied science in that respect.”
Wolf Hirschhorn Syndrome often affects a person’s speech, as well as contributing to learning difficulties. It is caused by a missing part of a chromosome, in a person’s DNA.
The condition leads to distinct facial characteristics and affects people randomly during pregnancy.
Emily said that Amelia can struggle with emotional regulation. Soon, she will be moving to a specialist school.
She added, however, that the Wolf Hirschhorn Syndrome Trust (WHST) has been of huge help to the family.
Emily after a 10km run around Roundhay Park (Image: Supplied)
“They’re a small charity because it’s a really rare condition,” Emily added. “They hold regional and national meetings for the families to get together and meet each other who are going through it.”
Some of the money Emily is raising, which can be contributed to via a JustGiving page here, could be earmarked for research into this rare condition.
“The events really help family feel like they aren’t on their own,” she said. “It’s a real spectrum of how severe the disability is.”
Despite not being a runner, Emily felt the challenge of a half marathon was one worthy of raising money for the WHST.
She said: “I wasn’t a runner until I had to be. I chose to do a half marathon because I’m not someone who goes to the gym, I’ve never enjoyed exercise or been in a sports team.
“I thought ‘what can I do?’ so I thought ‘what is my worst nightmare?’ so I decided to do running. I felt it was a bit cheeky to ask people for their money if it was for something that was easy.
“It’s a lot of work but that’s what I wanted.”
Amelia and other children with Wolf Hirschhorn Syndrome have been a constant source of motivation for Emily.
“When I do my runs that feel awful, I do stop and think that there’s a reason that I’m doing this,” she said. “It feels amazing to think that I’ve been a part of this, and that the money will go a really long way.”
