Lois, 8, ready to take the plunge

Spon­sored swim for best pal’s sis­ter

Rutherglen Reformer - - General Election - Dou­glas Dickie

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

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