St Albans mum set to walk for 30 hours to raise funds for son’s charity

The Carnell family.

The Carnell family. - Credit: Archant

The mum of an “amazingly brave little boy” with a rare genetic condition will walk for 30 hours to raise money for the charity which helps them.

Amanda Carnell, 37, who grew up in Cell Barnes, St Albans, was thrilled when she gave birth to Finlay, now seven – a firstborn son for her and husband Ollie, 36.

But their joy turned to despair when he presented with breathing difficulties almost immediately and was diagnosed, after five weeks of worry, with a condition that will kill him if he ever falls asleep without an oxygen mask on.

Amanda said: “He went blue on delivery and didn’t cry. When we approached his incubator [several hours later], he was covered in tubes and wires and we feared the worst. He was transferred to Great Ormond Street within two days. We were both devastated.”

CCHS (congenital central hypoventilation syndrome) results in abnormal development of the body’s automatic nervous system in early fetal life. The main consequence is that the body does not automatically breathe during sleep and sometimes at other times, such as illness. It is estimated to affect one baby in 50,000 – 200,000 live births.

Finn needed to be fitted with a tracheostomy at just seven weeks of age and his parents and grandparents were trained in how to care for him.

They endured an 11-month stay in hospital whilst his care package was set up, home equipment was ordered and carers were arranged and trained.

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Amanda describes managing the night care as the main struggle now, as Finn requires constant supervision. The lack of sleep has taken its toll on her health and it landed her in hospital on one occasion. A simple cold could cause him to stop breathing and makes him dependent on the ventilator for days.

She said: “We have always told him the truth about his condition and that if he goes to sleep without his ventilator he will die. We felt it was important to understand the severity of his condition.

“I know how easy it is to fall asleep whilst sitting on the sofa watching television. We don’t think about it, do we? We just drop off and no harm is done. If Finn drops off, he wouldn’t wake up.

“It’s a constant worry and it’s worse when I’m not there and don’t have control. At least I know if something happened when I was there I would do all I can to save him.”

It’s a concern that is made all the more real by other people in the CCHS support group experiencing fatalities. There are around 100 families living with the condition in the UK.

Amanda added: “We, as a CCHS family, regularly lose people. It is always hard as it reminds you how fragile your own child is.

“Our wish for Finn is a long happy healthy life full of love and laughter. All we can do as parents is provide him with the knowledge he needs to be responsible and hope he follows our advice. We raise him knowing he should never let CCHS stop him from doing anything he wants to do in life.

“He is an amazingly brave little boy who has faced more in his eight years than most people do in a lifetime. He never complains about his ventilators, carers or numerous sleep studies and appointments – he just gets on with life with a smile on his face.”

Riley, five, completes the family, who say they have an extremely close bond and the boys’ grandparents help out when Amanda and Ollie need a rest. Riley even asked to be trained in how to put the mask on his older brother and he looks out for him, especially when he is unwell.

The family will be there to cheer her on for her London to Brighton 100km challenge at the end of May, when she walks from Richmond Park in the capital to Brighton. She is undertaking gruelling training and has been pledged more than £1,327 for CCHS Support Group. If you would like to sponsor her, click here.