A mum of two special little boys is hoping our £10,000 Smile cash purse can help bring a ray of sunshine into their lives.
Julia Smith has waited three years and still has no definitive diagnosis for Ben (8) and Toby (5), but both have global development delay which means they are both still in nappies and unable to talk, walk or feed themselves.
Cerebral palsy has been mentioned, as well as autism in Ben’s case, but Julia, of Pennygate, Spalding, says despite extensive genetic testing she still does not know exactly what is wrong with her sons.
She said: “It is really hard not having a proper diagnosis. I don’t like putting labels on people but it would be nice to know what it is.
“We had one letter from a doctor which said something about ‘as your son has cerebral palsy ...’, but that was the first we had heard that mentioned.
“Both boys’ condition is alike in every way, but they have very different personalities – Toby likes cuddles but with Ben it has to be on his terms because of the autism.
“Life is a challenge but they have been like this since day one, so it’s just the way it is and we get on with it.
“Ben had pneumonia when he was younger and ended up on life support and it could have gone either way, so we are just grateful for what we have.
“The only time I find it hard is when we are with friends who have children the same age who are doing all these things that Ben and Toby can’t do.
“We have a daughter Molly who is 10 and she is amazing, she helps a lot.”
Julia and husband Darren have applied for £500 from the Spalding and District Round Table’s Smile Campaign pot to buy equipment for the boys, such as sensory toys, a hi-fi system, lights and bubble tubes, like the kind the boys enjoy at Spalding’s Garth School.
She said: “We have had an extension built which we use as a playroom and it would make the world of difference to be able to buy some of this sensory equipment to put in it.
“They enjoy them at school and it calms them down. Ben is often up all night and these things help to keep him calm.”