Determined Girl To Trek Macclesfield Countryside For Friends With Rare Disease

By Alex Greensmith

1st Jun 2021 | Local News

A charitable local schoolgirl will trek the Gritstone Trail to raise money for a pal - and her friend's brother - who suffer from a rare disease that makes everyday life tough.

Tess Liddle (8) of St Paul's Poynton Primary School, will trek 35 Miles with her Dad Owen in the first week of June.

They will pass many local landmarks like Croker Hill, Tegg's Nose and Bollington's White Nancy.

It is all to raise money to help fund a new treatment to save the eyesight of children suffering from CLN2 batten disease - which has affected Tess' classmate.

Tess' friend Amelia (8) and Amelia's big brother Ollie (10) suffer from the very rare and awful condition. It has already taken away Ollie's ability to walk and his eyesight.

Both of the siblings travel to London's Great Ormond Street hospital every two weeks to receive enzyme therapy straight into their brains. This brilliant treatment has slowed the effects of Battens, but unfortunately it will not stop Amelia losing her sight.

Tess wants to raise money to fund more research to stop Amelia, and any other children suffering from this horrible condition.

She has raised an amazing £1700 thus far via the crowdfunding side JustGiving, and can't wait to go on the fundraising hike for her friend.

"I feel really proud that I've raised so much money for Amelia and a bit surprised that we have got more than our target [of £500] already, said Tess

"Amelia and her brother Ollie are both very poorly with batten disease, it affects their mobility, speech and causes childhood dementia. We are trying to help raise money so Amelia can access a trial so she doesn't lose her sight.

It is Tess' first fundraising campaign, and it will also be the longest she has ever walked in her life.

Tess and her dad Owen will traverse the 35 miles walk, which passes through the Macclesfield countryside, on the 3rd to 5th June.

She is eternally grateful for those who have already donated, from Macclesfield and beyond.

"I hope it doesn't rain when I'm doing the walk", added the Year 3 pupil.

"I am really excited to do this walk with my Daddy and I feel really proud that I'm doing something to help my friend.

"Amelia and Ollie's mummy and daddy think I'm doing an amazing thing and are really happy I'm doing it to help them and their family and also to raise awareness of batten disease."

Amelia and Ollie's parents Mike and Lucy, had this to say about Tess' incredible money raising campaign:

"As parents we are overwhelmed with the incredible challenge which Tess has set herself in order to help her friend Amelia and other children who are battling from this horrific disease.

"Tess is only eight years old yet she has chosen to set herself a challenge which most adults would find hard to complete.

"We are extremely grateful to everyone who is fundraising for our little girl, however it has really touched us that Tess has seen and heard adults trying to raise funds in order to help her friend Amelia and Tess herself has asked if she too can try to help save Amelia's eyesight.

"We think this shows what a truly amazing, kind and thoughtful little girl that Tess is. We are so proud of her and we know that she has so many people around her supporting her.

"We know that she is going to smash her challenge and we know Amelia can not wait to meet her at the finish line."

You can donate to Tess Liddle's cause via this link.

UPDATE: Tess has since raised over £2,000 head of the start date for the walk on June 3.

You can also find out more about Amelia and Ollie, and CLN2 batten disease on this Facebook page.

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