ANNA & HAMIE's (Matt) fundraiser for RETT UK

Fundraising for RETT UK
raised of £500 target
by 197 supporters
Trek to Everest Base Camp April 2024, 5 April 2024

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RCN 1137820
We change lives and give a brighter future to those affected by Rett syndrome. Now.



With less than two weeks to go ...we are busy trying to pack all we need into a 10kg bag.... with no shoes too!!! (how cruel)!

We are seriously blown away by the generosity from all our friends and family. You lot are AMAZING.

No Pressure !!!! ekkkkkk

You may or may not know…. But us crazy trekkers are about to take on our biggest "bimble" yet!

April THIS year we shall set off to climb to Everest base camp for charity.

Our journey starts on the 3rd April heading out from the Uk and arriving in Kathmandu the next day. A day to adjust- then the trek begins with a crazy and scary internal flight. Then from Friday 5th April it’s shanks's pony for the next 14 days. The 14 days is a gradual climb. Averaging about 6-7 hours hiking a day, across rope ladders/bridges and mountain passes, up to an altitude of 5,364 meters to arrive at base camp.

Why are we doing this? Well firstly.. why not! You only live once!

But secondly and most importantly, we are doing this for a charity called Rett UK. Our dear friends Kevin & Helen have two beautiful daughters, Abby and Lia. Lia was born with Rett syndrome. Rett syndrome is a rare genetic disorder that affects brain development, resulting in severe mental and physical disability. It’s estimated to affect around 1 in 10,000 girls born each year and is rarely seen in boys.

Lia was about 3½ years old when she was diagnosed with Rett Syndrome. Her condition was not apparent at birth, which is the case for most children with Retts, but her physical development was slow. She rolled and commando crawled as a baby but never pulled herself up to standing or took any independent steps as a toddler. On her first visit to the neurology consultant at the Evelina Hospital, they wanted to test for Rett’s straight away because of a tell-tale sign of frequent and repeated hand wringing and clapping. Over the years, Lia’s development slowed further and she lost the ability to eat, drink, hold objects in her hand and became wheelchair-bound. Lia requires care twenty-four-seven. She cannot walk, talk or even sit on the floor unassisted due to risk of toppling over. Lia has had two operations relating to her gastronomy as she has to be fed liquids via a tube directly into her stomach due to being nil-by-mouth and risk of aspiration. A year and a half ago, she had a third major operation to insert metal rods the length of her back to correct scoliosis, another common side effect of Lia’s disability. More day to day, Lia suffers from reflux and frequent tonic clonic seizures which can cause her to bite her tongue or lip. Sometimes, Lia will have fits of laughter for no apparent reason, but likewise she can be very tearful, sad and upset for no reason – all of which are not uncommon in Rett Syndrome. However, for all of Lia’s “problems”, she is a happy and content little girl that will gaze into your eyes or watch your lips move as you talk to her, and smile in recognition of the attention that you give. If that doesn’t work, then Peppa Pig will almost certainly bring a beaming smile to her face! (Check out the photos above to see her smiling face)

Rett UK is a parent led charity dedicated to making a real, positive and lasting difference to people living with Rett Syndrome.

Rett UK make the lives of those affected by the devastating disorder more bearable and gives them hope for the future.

So please help us to raise money for this worth while charity.

About the charity


Verified by JustGiving

RCN 1137820
Imagine being told your toddler you thought was healthy, but perhaps slow to progress, in fact had a rare and devastating disability that would leave them needing lifelong 24/7 care. Rett syndrome changes lives irrevocably. With your support Rett UK is there from the beginning. #ToKnowHerIsToLoveHer

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+ £1,196.67 Gift Aid
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