A week of fundraising activities to support the family of a little girl with a life-limiting condition is under way, amassing more than £11,000 so far.
Colleagues at Odyssey Health Club and Spa in Knebworth are getting behind the spa's manager Laura Starks, who lives in Royston, after she and partner Craig were told the devastating news that their daughter Evelyn, who turned one this week, has spinal muscular atrophy Type 1.
The serious progressive genetic condition - with Type 1 the most severe form - makes muscles weaker and causes problems with movement. There is no cure, but there are treatments to help manage the symptoms.
Laura explained: "Our beautiful Evelyn - also known as our little pink Power Ranger - was born in November 2020 a happy, smiley and, from what we could tell, perfectly healthy baby. A little sister to Lexie, she was just perfect and we couldn’t have been happier.
"Then, in April, after noticing issues with muscle tone, we received the devastating diagnosis she has SMA, which has many similarities to the better-known motor neurone disease."
Laura says Evelyn received gene therapy treatment in June, to try to stop the progression of her condition, and has been showing small signs of improvement.
"We still have a long way to go," she said. "We take her into hospital almost on a weekly basis for a very comprehensive network of care, which she will require throughout her life.
"My life is in absolute turmoil, but I sometimes feel more love and joy in my family than may have ever been possible without this situation.
"Evelyn amazes me. It’s not human to have the level of determination, bravery and resilience she has, or go through all she does and come out smiling."
This week, Odyssey is holding Pink Power Ranger Week in honour of Evelyn, with events including a sponsored swimathon and special spa treatments for a donation.
Laura says the money raised will make "a massive difference" as they won't "need to stress over buying equipment that's not NHS funded".
An Odyssey spokesman said: "This little girl is an absolute superhero. It’s also her birthday week. Let’s make it a birthday to remember."
To donate, visit gofundme.com/f/help-support-evelyn-and-her-family
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