Picket Twenty mum's £10,000 plea to help her son live life to the fullest

Toby, now 14, seemed to have all the traits of a healthy 8lb 1oz baby boy.

But it was soon after that Gemma started noticing signs that something wasn't right.

"He had no head control, he wasn’t using his hands to grip and he would have lots of jerky movements which would involve his eyes rolling up," she said.

Gemma, from Picket Twenty, took her son to doctor after doctor, hoping to find an answer.

The 35-year-old full time carer finally persuaded someone to refer him to a paediatric doctor in Winchester.

But two weeks before his appointment, he became very ill and was admitted to the hospital.

"It was here that the word 'seizure' was first mentioned," Gemma said.

"Following extensive tests we were told that our beautiful boy had been having seizures, they told us he would be developmentally delayed but that hopefully by the time he was one year old he would have caught up and his seizures would have stopped.

"Our world was shattered but we held on to those words with the hope he would be ok.

"Sadly for Toby, that year came and went and it was soon discovered that he was on the other end of the spectrum and instead of getting better he got worse."

In the years since, Toby has been on and off medications, which his mum says impacts his ability to enjoy life.

Then two years ago, Toby had to have major spinal surgery to correct a curve and rotation with metal rods."

Toby has always needed custom made equipment to meet his extensive needs, but now due to his size, he is in need of an adult size chair to replace his current one.

"We spend as much time together as we can, because we don’t know how much time we will have with Toby, so we are at that stage we take each day as it comes and try and enjoy every moment," the mother-of-three added.

"Because we are quite limited where we can go with Toby, just a day to the zoo or family walks make the world of difference to him.

"I would be 90 per cent sure he is at his happiest when outdoors and when he is happy, the rest of us are happy."

Because of Toby's spinal surgery, he needs to be able to lie flat to stretch, otherwise he can suffer extreme pain.

But he has grown out of his current chair, which limits his ability to do this.

That is why for the past year, Gemma and the rest of the family have been doing all they can to raise enough money to buy Toby a new chair that will last him the rest of his life.

"The new chair would mean instead of making a swift retreat when he starts to feel pain, it would allow him to lay completely flat," Gemma added.

"The new chair won’t stop him having pain, but it will mean we can go out for an entire day out because we can help with the pain relief."

Click here to view the family's fundraising page

So far they have raised £4,500, but with further fundraising events cancelled due to the coronavirus pandemic, raising the further £10,000 needed has been slow going.

"He is at the point where he just can’t sit in the chair for any amount of time," Gemma finished.

"It is quite stressful for me, because I feel a bit useless in all of this.

"We just want to be able to do normal things again as a family with Toby."