THE mother of a baby who will be incontinent for the rest of his life has been told he is currently not disabled enough for benefits.
Seven-month-old Max Royan was born with Hirschsprung’s disease which severely affects his bowel.
As a result of a series of operations he will always be faecally incontinent.
At the moment Max, from Garsington, has a colostomy bag, but after an operation within the next few months, mother Leah Cato said she has been told he will need more than 30 nappy changes a day.
The average baby will go through around eight changes a day.
Ms Cato, who also has two healthy daughters, said she applied for Disability Living Allowance (DLA) to help with the costs of extra nappies and special creams for her baby son but was told that even after the operation he would be no more disabled than any other baby his age.
She said: “I have had two children before Max and I know he is not ‘just the same as any other baby’.
“The operation will leave Max completely incontinent. He will always be incontinent.
“The consultant has said he will constantly need changing, and will also be very sore so will need special creams which don’t come cheap. He also has special dietary requirements.
“To look at him you would think he is like any other healthy baby.
“But he isn’t.”
Hirschsprung’s disease usually affects sufferers by causing an obstruction in the bowel.
But in Max’s case – total colon Hirschsprung’s – his other complications and surgery will mean he will be unable to control his bowel movements at all.
Ms Cato, 32, said any additional money from the DLA would help the family.
She added that without DLA support she cannot apply for a carer’s allowance, which would allow her to be able to care for her son full- time.
She is due to return to work soon and cannot afford to pay for a specialist nursery which could care for her son.
A Department for Works and Pensions spokesman said Disability Living Allowance was not generally paid on the condition someone has, but because they have specific care and mobility needs.
He added: “All young children have care and mobility needs but parents can claim DLA for children who need a lot more help or supervision than other children of the same age.
“Anyone who disagrees with a decision can ask the department to look at the case again, presenting any new evidence, or appeal the decision.”
Ms Cato said she and her partner would be appealing.
Sara Jones, from Wigan, set up CHAMPS (Curing Hirschsprung’s And Making Positive Steps) after her own son Jacob, now five, was diagnosed. She said: “DLA for Hirschsprung’s is so hit and miss.
“It is very hard for people to prove it’s a disability.
“Life became much easier for us when we were approved for it.
“It’s easy for them to say your child is not disabled, but they don’t see your child screaming blue murder each night because they need constant changing and they’re in pain.
“I know people who have to go through 50 nappies a day.”
About the condition:
Hirschsprung’s is a life-threatening, congenital condition where the nerve supply of an area of the bowel has not developed properly
This causes a blockage of the large intestine due to improper muscle movement in the bowel.
Usually discovered either within the first few days or weeks of birth, the condition is rare and only occurs in about one in 5,000 children.
Treatment to remove the diseased bowel can make the sufferer incontinent.