Alfreton man's marathon challenge to help baby born with rare syndrome

The plight of a friend’s baby born during lockdown with a rare genetic condition has prompted an Alfreton man to take on an epic challenge.
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Dad of two Darren, known as ‘Daz’ Smith is taking on a 26-mile run from his home on Primrose Hill in Blackwell, to Blackwell Football Club, starting at 8am, on Sunday, December 13.

He is hoping to raise money to help his friends Zach and Louise Potts’ baby Jaxson who was born in July with Prader-Willi Syndrome.

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The illness causes a range of physical symptoms, learning difficulties and behavioural problems, including an excessive appetite which can later lead to weight gain.

Jaxson Potts who has a rare genetic conditionJaxson Potts who has a rare genetic condition
Jaxson Potts who has a rare genetic condition

Electrician Daz said: “When I heard of Jaxson’s diagnosis it hit me hard. I’m a parent and knowing Zach and Louise, I couldn't begin to imagine how they felt and what they were going through. They're two of the nicest selfless individuals around.

"I've always wanted to challenge myself to do a marathon, but never found the motivation to commit. What better motivation, than raising money for this beautiful boy and his family?

"Jaxson has a rare genetic condition affecting one in 15,000 babies. It will affect his muscle tone, his talking, crawling and walking. He has to be fed through a tube now and as he grows older he may feel the need to over eat. Through the correct treatment and therapy it can be improved.

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"The family have investigated an intenivee therapy centre in Texas, America, "the Napa Center" which costs £6,000 for three week treatment blocks.”

Daz Smith running to help baby Jaxson Potts who has a rare genetic conditionDaz Smith running to help baby Jaxson Potts who has a rare genetic condition
Daz Smith running to help baby Jaxson Potts who has a rare genetic condition

Daz added “All Zach and Louise want is to be able to provide their boy with the best life he can possibly have. He is their absolute world and its inspiring.”

During his training Daz has already hit his target of £3,000, raising £3,660 (to date) on his GoFundMe page.

He added: “The family has a long road ahead, so as many donations as possible will make that road a little less bumpy.”

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Louise, who lives in Blackwell with husband Zach, said: “We are just overwhelmed at the effort Darren has gone to for Jaxson. It is amazing and we are just so grateful to him.”

Daz’s fiancée Leanne Charlesworth said: “I’m so proud of him, the effort and time he’s put in, he’s just amazing!”