Battleborn Fitness Relay for XLH

Amy Bickerstaff is raising money for XLH UK
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Mash Direct Belfast City Marathon 2023 · 30 April 2023 ·

XLH UKVerified by JustGiving
RCN 1196811
XLH is a rare metabolic disorder with lifelong health issues, which until recently was poorly understood. XLH UK supports the UK community of patients and their families, contributes to research and campaigns for the best treatments and care.

Story

This year 30 members of BattleBorn Fitness NI are running relay teams in the Belfast Marathon 2023. We have chosen to raise money for XLH UK, a charity with a huge meaning for 1 of our members.

Aged 10 in 1999 Jennie was diagnosed with XLH, a genetic metabolic disorder which affects the way the body processes phosphate, which is essential for normal bone development. As a result Jennie experienced slow growth and bone abnormalities that interfered with movement and caused bone pain. This lead to multiple corrective orthopaedic surgeries in later years because of the combination of late diagnosis & lack of medication to prevent the condition.

In recent years Jennie has had 2 sons who both have inherited XLH. However with early diagnosis & the introduction of a new drug to treat XLH they have experienced few symptoms & the future looks bright for both boys.

This would not have been possible without XLH UK, who are working towards a brighter future for everyone with XLH by funding cutting-edge research, driving up standards of care and supporting people with the condition and their loved ones every step of the way.

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Donation summary

Total
£10,095.20
+ £1,540.15 Gift Aid
Online
£10,095.20
Offline
£0.00

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