Hampshire godmother set to take part in South Downs Way 100 to raise money for godson who has Congenital Central Hypoventilation Syndrome

Sarah Page, 42, has taken part in a 75km race as a warm-up to get ready for a 100-mile running challenge next month to raise money for her godson, Charlie Wagstaff of Denmead.

The ULTRA X 75km took place in Haslemere on April 15 and Sarah was the first female to run over the finish line, completing the challenge in eight hours and 23 minutes.

Sarah is taking part in the 100-mile challenge to raise money for her godson, Charlie, who has an extremely rare condition called Congenital Central Hypoventilation Syndrome.

This syndrome is where the involuntary nervous system which automatically prompts your body to breathe is impaired and those who are diagnosed with it have to have additional breathing equipment.

Having the condition means that Charlie stops breathing when he falls asleep at night, takes a nap or concentrates too hard, and his only means of survival is being connected to a ventilator mask.

Sarah said that her best friend, Sophie Wagstaff and her husband, work round the clock to keep their five-year-old son alive every day and she wants to try and raise money and awareness for the charity, CCHS UK.

CCHS UK works with the families of those affected by the condition and offers them support and advice on ways to help manage it on a day to day basis.

Sarah said: ‘Charlie is like any other five-year-old - he loves playing football, cricket and rugby, but he can’t automatically breathe. He has to wear a mask attached to a ventilator to survive a nap on the sofa, a snooze in the car and a night’s sleep.’

Charlie was diagnosed at six weeks old and he is one of approximately 1,000 people to have been diagnosed with this rare condition worldwide.

Sophie experienced a ‘normal’ labour with no complications and she assumed that when she went into hospital to be induced, she would be returning home with her baby – but things did not pan out that way.

Charlie stopped breathing a few minutes after he was born and a group of doctors and nurses had to rush into the delivery room to try and resuscitate him, whilst Sophie was taken to have surgery following a traumatic delivery.

Everyone was perplexed by what might be wrong with him because he seemed like a healthy baby boy, but he had to stay in hospital for four months after he was born, whilst professionals investigated his condition.

One consultant explained to Sophie and her husband that he had only ever seen Congenital Central Hypoventilation Syndrome once in his career and that it was highly unlikely – but once it was a possibility, Charlie’s bloods were sent off for testing.

Sophie said that the consultant agreed to trial a ventilation mask rather than Charlie having to have a tracheostomy, and through trial and the Denmead family had to adjust to their new normal.

Charlie, who started school last September, is thriving in education and he has two 1-2-1 assistants that help him through the day and ensure that he is breathing normally during school times.

Sarah added: ‘His mum Sophie is my best friend from school. We’ve known each other for over 30 years and I can’t believe the stress she and her family face daily to keep Charlie alive.’

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In her warm-up challenge Sarah came 11th overall in the 75 km Ultra X race along the Serpent Trail and the race was just the beginning as she gets ready for the gruelling 100-mile challenge.

Over the past bank holiday weekend, the mum of two ran the equivalent of a marathon plus an additional 30 miles in a bid to get her body ready for the upcoming race which is only a month away.

The South Downs race is in its 11th year and the route begins with a 3.7 mile loop through Matterley Estate, Winchester, and the remaining 96.3 miles will take Sarah to Eastbourne.

A Just Giving page has been set up for the event and Sarah has already surpassed her target of £5,000 by raising £5,210 before she even completes the event.

Sophie said: ‘It is enormous, I am hugely proud of her and that she is taking it on. She is training a ridiculous amount which means that for a busy full time mum of two, it is just extraordinary.

‘We are just very grateful that she is taking it on – she is doing it all for Charlie and we are just so grateful and proud of her.

‘Charlie is doing really well at school, he started last September. He has two 1-2-1s who are with him in the morning and the afternoon and they keep him safe and make sure that he is breathing properly.

‘He is doing brilliantly – it took a long time to get him into a mainstream school but now that he is, he is doing amazingly.

‘At the moment, there is an estimate of 1,200 people in the world so it is extremely rare.’

Sophie is incredibly proud of her best friend who is tirelessly training to prepare for the challenge, which will take place on June 10 and 11, 2023.

Sarah, from Liss, added: ‘I can’t do much to help day-to-day, but what I can do is complete crazy challenges and raise money for the charity that supports families living with CCHS.

‘The last race was so muddy, it felt like running through treacle. I was very lucky to have some amazing support, including Charlie who cheered me on at 50 km with his mum and grandparents.’

For more information about the fundraiser, click here.