Lois, 8, ready to take the plunge
Sponsored swim for best pal’s sister
A pupil at Hallside Primary has shown her caring side by taking on a sponsored swim to raise money for her best pal’s sister.
Two-year-old Elsie How suffers from the rare genetic disorder trichothiodystrophy (TTD).
Her family aim to raise £10,000 over the next few years to raise money for any specialist equipment they might need and to donate towards research into the incurable condition.
They were left overwhelmed when Lois Jones, 8, who is best friends with Elsie’s sister, Evie, 8, offered to complete a minimum of 30 lengths at Castlemilk Pool on Friday, May 26.
Elsie’s mum, Michelle, said: “They have always been quite aware of Elsie’s situation. We’ve been very honest to Evie and her friends have been really good with her if she’s feeling sad.
“Lois has had times in her life which were not great and she just wanted to help. She thought of what she could do and she’s a good swimmer. That’s just the kind of girl she is.”
Michelle, 37, and husband Colin, 40, were given Elsie’s devastating diagnosis only a few months ago.
TTD is a life-limiting condition that can affect people in different ways.
“It’s so complex, it affects different people in different ways,” says Michelle.
“The majority of children have additional support needs, they find walking challenging and have poor eyesight.
“With our wee girl, she’s highly sensitive to light.
“There is no cure. It’s just something you have to live with.
“The treatment Elsie gets is like physiotherapy. Even though she is two, she is doing things you would expect from a child of six months or a year. For example, she’s just learning to sit upright and she needs to work hard at it.”
Michelle and Colin, who stay in the Westburn area of Cambuslang, first took Elsie to see a doctor over a year ago.
After seeing a number of specialists she was eventually diagnosed with TTD earlier this year.
And Michelle admitted to some relief at finally knowing what condition Elsie had. “We had no idea anything was wrong until Elsie got to about one. She was not hitting milestones and her eyes were flickering.
“She picked up a respiratory virus and because her immune system was so low she had to go into hospital.
“It was only very recently we found out. We are still getting our heads around it.
“It was awful but we were well advised. When they told us that she wasn’t going to die I felt relieved.”
The family have set up a Just Giving campaign to reach their £10,000 target.
As well as the sponsored swim, Evie’s dance school, Shhh Dance, donated the takings from their raffle at their annual show on Friday to the campaign.
TTD is life-limiting, but Michelle and Colin are determined not to dwell on that and give Elsie, who attends Westburn Nursery, as good a life as possible.
“It’s something we try not to think about,” said Michelle.
“We just try and take it every day at a time. As long as she keeps progressing, that’s good news. With TTD the immune system is really low so she is prone to illness and for us that is more of an issue rather than thinking about how long she is going to survive.
“We’ve been in contact with families who have children that have lived to 28.
“At the moment we are just planning for the future.”
There is no cure. It’s just something you have to live with
Best pals Elsie with big sister Evie (left) and her best friend Lois who is taking part in a swimathon to raise money
Little star Elsie was diagnosed with trichothiodystrophy earlier this year