THE family of a baby with a very rare genetic condition have said they are facing a constant battle to get the support they need.

Seven-month-old Theo Atkinson has TAR syndrome and as a result of this he was born without arms and a problem with his platelets.

His parents, Marcus and Rachel, who live in Slingsby with their older son, Edward, said they faced emotional and financial stress to secure the support the family needed.

Marcus said: “We face constant daily challenges in trying to secure support from the local authorities for occupational therapy or funding for other items that will be crucial to Theo’s development. It is also the time we have to wait for these things also put Theo at risk.”

The family were also forced to submit an 18-page letter, including photos of Theo, to appeal to amount of Disability Living Allowance (DLA) they were awarded for him.

Marcus said: “Due to Theo’s condition he requires 24/7 care by his mum, so we applied for DLA as a hope that Rachel would be able to continue to care for Theo and his very unique needs.

“We were first awarded the lowest care rate of DLA which is £23.20 a week.

“This therefore means that we would have been unable to claim carers allowance or access the disabled part of universal tax credit.

“Fortunately our reconsideration letter has been accepted and that the decision to award Theo the lower rate has been overturned for several reasons and the higher rate has now been awarded.

“Although the Department for Work and Pensions (DWP)has redeemed themselves slightly with the quick response to the reconsideration, we were given no guarantees and the level of detail we had to go to for Theo seemed excessive.

“However we still plan to raise the process with our MP as this has been a battle and we have had to go to extremes to secure this.”

Marcus said although they were delighted their appeal had been accepted there was still a great deal of discrimination against disabled babies and their families.

“Working for Rachel is going to be difficult due to Theo’s rare and very complex care needs, but trying to gain any support seems to take too long and leaves us and other parents with financial difficulties - difficulties we should not have to worry about when we already have enough to deal with,” he said

Marcus said: “For example, funding Theo’s specialist swimming lessons that he has to undertake to strengthen his core muscle, which needs to be developed as much as possible so he can sit up and try to move, but this doesn’t even scratch the surface of what challenges we face, day in and day out, hour in, hour out.

“I would like to ask the policy makers if they would feel the same if it was their baby.”

Rachel said all they were looking for was the support they needed.

“On top of his daily care I also have numerous hospital appointments and recently had to spend a week there,” she said.

“We don’t expect to get any money for free but just to get the help we need and have some support on our side.

“Theo would really benefit from extra sensory toys but they cost so much and it puts such a stain on the family finances.

“We should not have to prove that Theo is disabled when it is very clear to see what he has to cope with and how different he is to a normal baby, which means he needs so much more care.”

Rachel added: “We are very grateful to all those who have supported us, including the hospital team and our MP Mr Hollinrake.

“We love Theo to absolute bits and wouldn’t be without him, but wish we didn’t have to go through the emotional stress and financial stress and we know we are not alone with this.”

Thirsk and Malton MP Kevin Hollinrake said: “I was very sorry to hear about the difficulties the Atkinson family is facing accessing support for their little boy, Theo.

“I have made contact with them to find out more about their circumstances and to offer them my full support and assistance in ensuring they do receive appropriate financial help consistent with the challenges they face.

“I will do everything I can to help them.”