Wigan couple take on charity challenges as rare condition means their baby forgets how to smile
“We knew in our guts something was wrong.”
Those are the words of new mum Claire Yong-Ching when her four-month-old son Theo started to become unwell.
Despite doctors telling her and husband Andrew that it was nothing serious, their instincts as parents told them otherwise.
Claire, who lives in Appley Bridge, said: “Theo was born on April 24 and he was fine up until about four months old, when he started with colic-y symptoms.
“We took him to see numerous doctors, took him to A&E and was told it was colic, teething, nothing to worry about.
“We knew in our guts something was wrong.”
Claire works in the radiography department at Wigan Infirmary and Andrew is a physio there, so they managed to speak to a paediatrician about their son.
Claire said: “He agreed to have a look at a video of Theo where he was having an episode and he recognised it straight away. He said it was infantile spasms.
“We had never heard of it. He said it was not good and the prognosis wasn’t good and told us the worse case scenario I think. We were distraught.”
A scan was carried out at Royal Manchester Children’s Hospital, which confirmed Theo had a rare condition called infantile spasm syndrome.
It is a seizure disorder and affects his body and his eyes. They last for a few seconds, but Theo has “cluster spasms” where the seizures happen repeatedly for up to 20 minutes.
Tests are being carried out to reveal the cause.
Theo’s prognosis is not known and while the spasms may stop when he turns two, he could then have a kind of epilepsy or learning difficulties.
Claire, 30, said: “At this moment in time we don’t know what Theo’s future will be. He is developing normally, as a six-month-old should be, but when he has these spasms he tends to forget things, like he will forget how to smile.”
At the moment his parents are hopeful, as a scan showed an irregular brain wave had resolved and Theo has not had a spasm for two weeks.
But steroids he is taking could also have stopped the spasms, so they will have to see what happens when he is weaned off the strong drugs.
There are other ways of treating the tot though, with one option being a trial where he will follow to special keto diet.
Infantile spasm syndrome is relatively unknown among both parents and medics, so Claire and Andrew have been inspired by their son to do something about that.
They want to raise both money and awareness to promote the condition and make a difference.
Andrew has decided to run 36.2 miles, while Claire will cycle the same distance, in aid of UK Infantile Spasms Trust.
They have already surpassed their £2,000 fund-raising target - despite the challenges not taking place until April, a week before Theo’s first birthday.
Claire said: “If we can raise more money for the research, that’s really good. With Covid, all the funds are drying up for research and if Theo is going to be part of a trial, they need money to keep going.
“It’s so easy to be diagnosed with colic - it has all the same symptoms as colic.”
Andrew, 30, is a keen runner and completed a marathon earlier this year to raise money for charity, after a friend’s baby was diagnosed with a heart condition.
After a tough few months for his own family, he wanted to do something positive in honour of Theo.
He set himself a challenge of running 10 miles further than a marathon - 36.2 miles in total - and is planning to go from Wigan along the Leeds-Liverpool Canal.
Andrew said: “The marathon was challenging but I wanted to challenge myself further.
“Theo is going through a hard time, but he’s battling. He’s going through a challenge most of us probably haven’t experienced in 30 years of life.”
Claire will be getting on her bike to join Andrew for the journey - something she says is “completely new” to her.
“I’m feeling motivated,” she said.
“Covid is getting everyone down. Theo’s immune system is low because he’s on steroids and we can’t really go anywhere, but this is getting me out to practise. We are trying to do something to help our mental health too.”
The couple hope Wiganers will show their support by sponsoring them for their mammoth physical challenges, but also hope to make people more aware of infantile spasms.
To boost the money raised, Claire is organising a raffle and contacted local and online businesses to see if they would donate prizes.
She said she was “overwhelmed” by the support received and thanked those who donated the 26 prizes.
Her cousin Beth Johnson will be raising both money and awareness at Little People Nursery in Aspull, where she works, for Infantile Spasms Awareness Week at the beginning of December.
She has plans for a host of activities for the children, including a raffle, wear purple day and a sports day.
Donate to UK Infantile Spasms Trust hereAndrew and Claire hope to raise money for Infirmary’s rainbow ward in future, as they praised all the staff for the “unbelievable” care given to Theo.
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