BBC Children in Need Appeal Night takes place next week. The fundraising night raises thousands of pounds for children and young people across the town, including Swindon Children Without a Diagnosis or with rare disorders. Teresa Brett, who runs the support group, has shared her story with EMMA DUNN to help support the BBC appeal. Children in Need will be on BBC One on November 15 at 7pm.

LOOKING after a child with a learning disability is hard enough, but dozens of vulnerable children across the area are living without a diagnosis.

Teresa Brett’s second son, Robin, who is now 18, has learning difficulties, but she and her husband didn’t know why until three years ago.

The experience inspired Teresa and another mum to start Swindon Children Without a Diagnosis or with rare disorders (SCWAD) in 2009, when doctors still hadn’t fully diagnosed Robin’s condition.

“I am an older parent but I would say, regardless of age, looking after a child with learning difficulties is one of the hardest things anyone could ever do,” said the 59-year-old, who lives in Covingham.

“Your child never grows up and you have got the constant worry about what is going to happen when you are not here or when you are too old to care for them. That is going to worry you for the rest of your life.”

Robin was born at just under 10lbs in July 1995.

As soon as he was born, doctors noticed he wasn’t breathing properly and whisked him off to the special care baby unit.

Two hours later, he was handed back to Teresa and her husband Jeremy and they were allowed to go home the following day.

The only thing the doctors noticed that was unusual were the folds on the back of Robin’s neck, similar to a child with Down’s syndrome, but they said they were not overly concerned.

When he was two days old, Robin was readmitted to hospital due to a high temperature, and doctors found four holes in his heart, misshapen kidneys, and all his organs were enlarged and squashing his stomach.

“For two weeks they couldn’t tell us if he was going to live or die. It was absolute hell,” said Teresa, a mother-of-two.

“Our whole family were so happy when Robin was born and then 48 hours later they couldn’t tell if he was going to survive.”

Robin had further tests at John Radcliffe Hospital in Oxford and was diagnosed with Congenital Adrenal Hyperplasia (CAH), which is a metabolic disease and genetic defect of the adrenal gland, which means Robin cannot produce several vital hormones and has to take steroids to replace them.

However, this diagnosis did not explain why Robin had complex learning difficulties.

Robin also has very poor muscle tone, couldn’t walk until he was two years old and has complex learning difficulties.

“We had been to meetings of the CAH support group but we never saw another child with learning difficulties,” she said.

“It is really stressful living without a diagnosis for a child. Living with a disabled child is hard but it is even more difficult when there is no one out there to support you because you don’t fit into any of the support groups available.”

In 2010, after further tests, the family finally found out that Robin’s learning difficulties are due to a condition called chromosome duplication.

Initially, Teresa and her husband, Jeremy, blamed themselves and assumed it was down to the age at which they conceived Robin, but this was not the case. The condition actually developed within Robin, it was not passed on.

Robin currently goes to school in Wantage.

His speech has improved and he can now often let people know what he wants.

He has poor muscle control and finds it hard to control his tongue and finds it hard to write as he cannot hold a pen for long.

Robin has been fitted with splints as he has poor mobility.

His left foot became more deformed due to suffering a fall and fracture and has had to have an operation on his foot to help.

Teresa, Jeremy and Teresa’s 29-year-old-son, David, are his rocks.

Teresa said: “Robin is the happiest child you could meet, he is full of laughter. When people are away from him they miss him, because his personality is infectious.”

How Children in Need is changing lives

SWINDON Children Without a Diagnosis or with rare disorders is a support group for parents and carers of children who have rare chromosomal or metabolic disorders or who remain undiagnosed.

As well as supporting parents and carers with coffee mornings and socials, the children meet in monthly activity sessions.

SCWAD is one of 10 projects in Swindon working with disadvantaged children and young people that receive a total of £400,588 from Children in Need between them.

Children in Need have provided a grant of £27,641 for SCWAD over three years so they can hold monthly activity session for four hours where the children can have fun doing various activities such as arts and crafts, cooking, music, and sports.

Teresa said: “Our children and young people are some of the most vulnerable young people you could ever meet.

“We are incredibly grateful to Children in Need for the grant. We applied for it in our second year and as a result of that we were able to start activity sessions.

“The three-year period of the grant is almost up now but we are going to put in another application soon.”

For more information visit www.scwad.org.uk or phone 07913 625977.