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Grantham family will take on 50km walking challenge to raise awareness of rare genetic condition



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A Grantham mum is preparing for a 50km walk in the Peak District along with her parents in a bid to raise money and awareness for those with a rare condition.

Heather Hodson’s two-year-old daughter Mollie was diagnosed in April 2021 with a rare genetic condition called Phelan-McDermid Syndrome. It’s extremely rare and only 300 people have been diagnosed in the UK and around 3,000 in the world.

The syndrome means that part of the chromosome 22 is missing which can affect people in a variety of ways, mainly with mobility issues, but also with low muscle tone, speech delays, seizures, heart and kidney issues and learning difficulties. For little Mollie it means she will need care for the rest of her life.

Heather Hodson and her parents, Steve and Dawn, will take part in the Peak District Ultra Challenge 50km walk. (56366275)
Heather Hodson and her parents, Steve and Dawn, will take part in the Peak District Ultra Challenge 50km walk. (56366275)

At present there is no cure and limited resources, and the charity PMSF UK is the only way to spread awareness and provide support and information to families who are diagnosed in the future.

Heather, of Winchester Road, Grantham, and her parents Steve and Dawn will be undertaking the Peak District Ultra Challenge 2022 in a bid to raise money for the charity. The family will be walking this on July 9 and 10, 2022.

Heather said: “Mollie is an amazing little girl and has had to overcome challenges in her short life so far. We wanted to push ourselves and do this challenge for Mollie and all the other children and adults with Phelan McDermid Syndrome that have day-to-day struggles, too. The more awareness we raise about the condition the better!"

Heather Hodson's daughter Mollie, 2, has been diagnosed with a rare genetic syndrome. (56366273)
Heather Hodson's daughter Mollie, 2, has been diagnosed with a rare genetic syndrome. (56366273)

Heather added: “Any awareness and support we can raise will be fantastic as we have felt very isolated over the past two years in our journey. We dealt with this in lockdown with no face-to-face contact with medical professionals. PMSF UK will greatly appreciate the publicity we can raise.”

Heather’s employer, Castlegate Financial Management who are based in Grantham, have also nominated PMSF UK as the charity they are supporting.

If you would like more information on the challenge or would like to donate you can visit Heather’s fundraising page at https://www.justgiving.com/team/phelanlucky



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