Annaclone family's fundraising mission to help Callum (4) talk and walk

But, he faces a daily battle…the four-year-old, from Annaclone, was diagnosed with a very rare genetic syndrome called TUBA1A - just one in 800,000 has this.

It affects the formation of Callum's brain which means Callum is non-verbal, has varying muscle tone, balance, mobility and communication issues, epilepsy and is developmentally delayed.

For Callum to reach his full potential, he needs access to specialised therapies, some which are not even available in the UK.

These therapies are not just treatments, they are life-changing opportunities for this Donard Special School pupil.

The O’Hare family, in conjunction with the charity Just4Children, have launched a Justgiving page as they aim to do everything they can to help Callum walk and talk.

The page went live last Friday and, already, the local family are “amazed” at the generosity and goodwill of people.

His mum, Roisin, has spoken of how much these donations will transform Callum's life.

“Callum had an MRI and got the diagnosis of TUBA1A at just nine months old.

“Because it is so rare, the doctors couldn't tell us what shape or form this diagnosis could take.

“We were told ‘you are both going to always know his needs more than us, he’s going to be unique, and it’s going to be his journey’.

“We have done a lot of research and we have only found three children with Callum’s mutation in the world.

“We have met a lot of parents with children with special needs at different therapies and, even though these children might not have the same diagnosis as Callum, some show similar traits to him, like the muscle tone.

“That’s when we started looking into other therapies, even outside of the UK.

“Callum is not walking and he’s non-verbal, but he’s progressing at his own wee rate.

“We need to do a lot of fundraising for private and home therapies to get him to a place where he can live comfortably.

“He's just finished his nursery year in Donard Special School and is looking forward to P1.”

It was at one of Callum’s therapy sessions at Easter time that the O’Hare family heard about Just4Children. The charity’s mission is to improve the health and lives of children across the UK.

“It’s a fantastic charity, and we know that everything is done in a very regulated way,” explained Roisin, who is also mum to 10-year-old John-Patrick.

“The Justgiving page was launched last Friday and it’s doing amazing - we want to thank everyone who has donated so far.

“If we raised the £75,000 fundraising target, it means we can take Callum to the likes of NAPA (the world-renowned paediatric therapy programme), Swim Lab in Lanzarote and look into TMR in Boston and CME in Toronto, which would be life-changing.

“These intensive therapies really help, it’s amazing how much progress can be made.

“One six-year-old boy went to an extensive therapy session, he had no words going and after three weeks of therapies he came home with 20 words - that’s just unreal!

“It’s life-changing when a child can communicate - that is the aim and we are determined to keep going.”

Imagine the joy of Callum taking his first steps. The excitement in his eyes as his words finally find their voice.

To make this happen, Just4Children need to raise £75,000.

Every pound donated directly funds the therapies that will strengthen his muscles, improve his co-ordination, enhance his speech, and help him walk.

Chronicle readers can donate by visiting: www.justgiving.com/campaign/callumsjourney