Rugby man saddles up for 100 mile ride in honour of baby with rare genetic condition

Stephen is in training for the ride.
Stephen is in training for the ride.

A Rugby man is getting on his bike for a 100 mile ride in honour of his niece who has a rare genetic condition.

Stephen Emery is in training for the challenge to raise money for the Prader-Willi Syndrome Association UK.



He said: “This charity is very close to my heart as my nieve, Lyra, was diagnosed with the condition when she was born in January, 2015.

“PWS affects roughly 1 in 25,000 births, with 30-40 newborn babies diagnosed with the condition each year in the UK. It is a lifelong condition that currently has no cure.”

He said the impact can vary from child to child.

Stephen added: “Lyra turned two at the beginning of January and has had her fair share of challenges in her short life, each of these challenges often affect any child with PWS. “Lyra has very low muscle tone which means she isn’t yet able to crawl, stand or walk. She spent much of her first year being fed through a tube and receiving oxygen support. Children with PWS often also have learning difficulties.

The most significant impact for any child with PWS only starts to develop between the ages of two and six.

“At this point, the child loses the ability to control their appetite,” said Stephen.

“When this happens for Lyra she will be left with an insatiable appetite 24 hours a day, seven days a week. It won’t matter what food she eats, she’ll never be able to satisfy her hunger.

“The problem isn’t about lack of self control or greed, something within the body doesn’t work correctly and prevents the sufferer from recognising they have eaten and are full.”

Now Stephen hopes to do something in return for the charity who help Lyra and her family.

On Sunday, July 30, he will take part in the 2017 London-Surrey 100 mile bike.

Stphen said: “The PWSA do amazing work providing support to families affected

“Unfortunately due to PWS being a rare-condition PWSA doesn’t receive much financial backing, but it does mean that donations they do receive make a huge difference to the work they do.”

Stephe, who used to be a serious runner, said: “This is a really a big challenge for me.”

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