Brandlesholme teen raising funds after rare eye condition diagnosis

Lily Tyson, 15, launched her latest fundraiser in support of the Manchester Royal Eye Hospital this month after being diagnosed with a Uveitis, a rare eye condition causing inflammation and sometimes sight loss.

In April 2020, Lily was also diagnosed with Turner Syndrome, a rare genetic condition which leaves one X chromosome completely or partially missing.

As a keen footballer, Lily has taken part in a number of active challenges over the past year in support of the Turner Syndrome Support Society, including walking up Mount Snowdon last July. 

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Lily Tyson on Mount Snowdon during her sponsored walk in July last year. (Image: Chris Tyson)

However, she has had to take a step back from fundraising events as the steriods used to treat the Uveitis have reduced her energy levels, making physical activity more difficult. 

Still eager to say thank you for "amazing" care the hospital has provided, Lily’s dad Chris offered to lend a hand.

He said: “I work in the NHS and a few colleagues of mine were talking about Lily and the fact that she wanted to do this fundraising.

“What we suggested was ‘you set us challenges and we will do them for you’ and where she feels fit enough to do things, she can do.”

Over the next few months, Lily will set her friends and family a variety of challenges to help raise awareness of Turner’s Syndrome and Uveitis, including sponsored sports events, bake sales and coffee mornings.

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Friends and family came out to support Lily as she walked up Mount Snowdon to raise awareness of Turner Syndrome (Image: Chris Tyson)

Having already raised £12,000 for Turner’s Syndrome, her latest fundraising goal is £500 to be split between the two charities.

Next month, she will undergo surgery on her right eye in the hopes of easing her symptoms and reducing the side affects from the current treatment. 

As Uveitis is so rare in children, Lily will also be taking part in a study run by Great Ormond Street Hospital to help doctors better understand the condition.

Chris added: “She’s really positive, she’s always smiling. You wouldn’t think she had all this going on but it her positivity that gets her through.

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“She fed up that she can’t do the usual things that she normally does, but she’s such a positive girl and she just keeps on going.

“The Manchester hospital have just been absolutely amazing, she wants to give something back, she wants to raise awareness."

Lily is collecting donations for the Turner Syndrome Support Society, and the Manchester Royal Eye Hospital on her JustGiving page.