South Yorkshire family living with rare condition aim to spread awareness through charitable work

A family from South Yorkshire living with a rare disease are aiming to spread awareness to help more people in the region and across the country.
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Robyn Sharp, aged 31 from Barnsley and her children Leo, six and Eva, three, were all born with X-Linked Hypophosphatemia, a metabolic condition characterised by low levels of phosphate in the blood - causing brittle bones, bowed legs and pain throughout the body.

In most cases, the signs and symptoms of hereditary hypophosphataemia's begin in early childhood, with children experiencing slow growth and developing bone abnormalities that can interfere with movement and cause bone pain.

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Leo and Eva both developed craniosynostosis as a symptom of XLH and have both had surgery on their skull to extend the bone to allow for the brain to grow.

Robyn Sharp, aged 31 from Barnsley and her children Leo, six and Eva, three, were all born with X-Linked HypophosphatemiaRobyn Sharp, aged 31 from Barnsley and her children Leo, six and Eva, three, were all born with X-Linked Hypophosphatemia
Robyn Sharp, aged 31 from Barnsley and her children Leo, six and Eva, three, were all born with X-Linked Hypophosphatemia

They also have to have doses of phosphate and calcium several times a day to strengthen their bones and require an injection of a new drug called Burosumab every two weeks.

Robyn has her own daily battles and struggles to get around due to poor mobility – last year, she fell down the stairs in her home and needed surgery, although the injury will not likely heal because her bones are so brittle.

In 2019, Robyn’s stepfather Chris Horton set up a charity called Leo’s Mission to raise money for XLH UK charitable trust and spread awareness of the rare disease that affects around 1 in 20,000 people.

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Speaking about the charity work, Chris said: “Before we started this Facebook page in 2019, nobody had ever heard of it.

Leo Sharp, aged 6.Leo Sharp, aged 6.
Leo Sharp, aged 6.

“It means a lot to us because the more people we can get to be aware of this disease, the more diagnoses there will be.”

On Friday, September 24, at 7 pm, there will be an event at the Barnsley Trades Club on Common Road in support of XLH UK.

Chris is a drummer in the local band Altamont, and the band will play to an audience featuring representatives from XLH UK, including founder Oliver Gardiner.

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There will also be live entertainment, a raffle and a buffet for visitors.

For more information about XLH and to donate money, visit xlhuk.org

You can also visit the Leo’s Mission Facebook page at www.facebook.com/Leos-Mission-101565648020227/