When Charlie Conway was born his parents were warned that he may never walk or talk.
Charlie, now 10, has defied doctors’ predictions and despite his complex needs he continues to amaze.
He has just won a national competition to design the new packaging for McCain Home Chips to mark the launch of the Scarborough-based business’s £1m partnership of Family Fund, the York Charity that has helped him and his family over the years.
Charlie suffered a brain injury in the womb after his mum, Katie, suffered respiratory arrest and stopped breathing when she was 32 weeks’ pregnant.
Both she and Charlie, who had to be delivered by emergency C-section, were starved of oxygen.
“They told us that is was unlikely Charlie would ever walk or talk. I don’t know whether I was just in denial but I was determined that Charlie would achieve his full potential,” says Katie who suffers from a life-threatening form of asthma.
And for the last 10 years Katie and husband Andrew from Bingley have dedicated love, time and energy into helping Charlie.
Despite the doctors’ prediction Charlie walks, talks and attends school with a lot of support. He is looking forward to going to secondary school in September although it will be gradual process.
“We always focus on the positives – what Charlie can do rather than what he can’t,” says Katie.
Charlie was diagnosed with autism when he was three after he consistently failed to hit his developmental milestones and started to develop some obsessions.
“Charlie absolutely loves the woods near our home. But he easily gets sensory overload and runs away. He has no sense of risk and little fear for his own safety so we have to hold his hand all the time,” explains Katie.
“We do sometimes get looks from people as when you first see Charlie he looks like any other ten year old and people are wondering why we are holding his hand. But he also has some physical ticks – such as flapping his arms and making a noise. I think I have developed a thick skin when I see people starring at us.”
She says the main problem is getting Charlie to leave the woods. Family trips have been made a little easier with the help of York-based charity Family Fund who give grants to families of children with disabilities.
“We had heard about Family Fund but we were reluctant to get in touch at first. Maybe we were too proud. But someone explained to us that it would enable us to do more things with Charlie.” They applied to the charity for funding to buy a Trotter - a buggy that looks a bit like a wheelchair but grows with the child. It meant that the family could go on holiday for the first time.
“Looking back I think we must have been mad but it was the best thing ever,” recalls Katie. “The Trotter means we know Charlie is safe, but also he feels safe in it. We went to Lanzarote and Charlie said he wanted to take part tin a children’s talent contest – he said he wanted to sing.
“We couldn’t believe it and worried how he would react interacting with other children and getting on stage.” But they needn’t have worried,
“He just got up and sang Queen’s Bohemian Rhapsody and he ended up winning. If it hadn’t been for Family Fund we would never have gone on that holiday and never discovered that Charlie can sing.”
He now has singing lessons, and a video his mum posted on social media during lockdown went viral with more than 15,000 people viewing it.
Lockdown has been particular hard for the family, as Katie’s condition means they have all had to shield since last March.
But despite their precuations they caught Covid in January with Katie ending up in hospital.
“It meant Charlie hasn’t been able to go to school which is very hard for him to understand. Charlie needs routine and for him school is about lessons and learning not home and so home schooling has been a challenge.”
Another piece of equipment funded by Family Fund is a deep pressure vest that Charlie wear to help with his concentration.
“It really helps to keep him calm. It is like someone giving you a big hug. But it has been very hard to try to get to understand what’s happening and we have had lots of meltdown and crying.”
It was while trying to engage Charlie that Katie saw the post about the McCain’s competition.
“I didn’t think he would want to do it as he likes to do his own thing, but he said he did, although he wanted to include a drawing of himself on it as well.”
Charlie drew himself wearing his ear defender that he wears when he gets sensory overload.
“He used to hate wearing his ear defenders as they made him look different, but he now knows they help and he even puts them on himself when things start to get too much. It was emotional to see that he had drawn himself with them on.”
Charlie’s design so impressed the judges that he beat more than 250 entries from across the country to have his colourful drawing featured on over 18 million packs being rolled out nationwide from this month.
“We couldn’t believe he’d actually won,” says Katie “It has given a real boost to his self-confidence which is so needs.”
Family Fund CEO Cheryl Ward said: ““Parenting children with complex physical and emotional needs can be challenging, but families absolutely need and deserve the chance to enjoy the simple things in life.”
Although Charlie can be challenging, Kate says: “He has so many qualities that I don’t see in other children.”
The £1m over three years partnership with McCain comes as Family Fund reveal there has been a 37 per cent rise in families raising disabled or seriously-ill children seeking support during COVID-19.
Seventy three per cent of the families the charity works with have not had a day out in the last six months, while two in five families have not played together away from home in the last six months.
Three in five of the families contacting Family Fund have seen their household costs increase as a result of the COVID-19 outbreak.
For grant information visit www.familyfund.org.uk or by calling 01904 550055.