Stopped in his tracks

BULKY buggy . . . doting parents Paula and Peter Ryan with Aaron and his buggy

A POORLY toddler who suffers from a rare muscle disorder will be left stuck at home — because benefits chiefs say he’s 18 months too young for a mobility allowance.

Little Aaron Ryan is 19 months old. He has spent his young life in hospital after being diagnosed with X-Linked Myotubular Myopathy, a condition affecting one in 50,000 boys with only 1 per cent making it to the age of 10.

Doting parents Peter and Paula Ryan, from Hathershaw, are delighted that he will be discharged on June 1 — but without the benefit they can’t afford a specially-adapted car to help him live life to the full.

He does have a specialised buggy, which holds his ventilator and battery pack. But he needs it to travel in, as a car seat would keep him in a dangerous upright position. The buggy is too bulky to fit in a normal car and he has so far been transported in hospital mini-buses.

The Department for Work and Pensions (DWP) say red tape prevents them paying out as children under three can’t walk properly so are not entitled to mobility benefit.

Ironically, Aaron is entitled to a blue badge for disabled parking — useless to his parents without a suitable vehicle to take him in.

Mrs Ryan said: “We want to spend as much time enjoying life with him as possible.

“I want him to have an as near normal a life as possible. If we can’t take him out it won’t be normal for him.

“His grandparents live in Yorkshire and South Manchester. Aaron’s grandad is currently fighting cancer and has been unable to see his grandson for a few months now as we can’t transport Aaron. I think it’s disgraceful.”

Aaron was extremely poorly when he was born at the Royal Oldham Hospital. It took 22 minutes to resuscitate him.

He was later diagnosed with the disorder, which is characterised by muscle weakness and leaves him unable to sit upright or control his head. It affects his breathing and he had to have a tracheostomy to keep his airway clear and is dependent on a ventilator.

His parents have received special training to look after him.

Mrs Ryan said: “Aaron enjoys his life. It was scary to begin with but now it’s normal for us as we have got used to it and what Aaron needs.

“Mobility benefit would help us to get an adapted vehicle for him so we could transport him safely. We’ve looked at second-hand vehicles but they still cost £10,000 and we just don’t have that kind of money.

“Aaron’s medical condition warrants a blue badge awarded to him but not mobility. We would have thought the two went hand in hand.”

The DWP told them the rules are laid down in law and cannot be varied on a discretionary basis.

Their MP, Michael Meacher, twice took up their fight but was unable to get the DWP to change their stance and advised the couple to wait until Aaron’s third birthday.

A DWP spokeswoman said: “We do understand that people caring for a young child with a chronic illness need support.

“Regulations state that a child under the age of three cannot be considered for the mobility component of Disability Living Allowance.

“Families may be eligible for other benefits, which include Income Support and Carers’ Allowance. To make a claim for a benefit, they should initially contact Jobcentre Plus.”