A family from Willesborough are trying to raise awareness of a rare disability that has affected their son.

In March, just after his second birthday, Freddie Lewis was diagnosed with Angelman syndrome and since then his parents, Zoe Badham and Conor Lewis, have been finding out about the condition.

Zoe, 28, said: “To look at Freddie, it doesn’t look as though he has a disability.

“It was a normal pregnancy and delivery. There were no problems at all, and he was completely healthy when he was born until he was about six months, and he just stopped developing.

“Although his older brother, Thomas, was quite advanced for his age, by comparing them I just knew that Freddie wasn’t developing as well.

“He couldn’t support his own head or even roll over.”

She added: “We were going back and forth from the doctors because they didn’t believe anything was wrong, but I knew deep down something wasn’t right.

“I started to doubt myself because nobody believed me.

“I was wondering if I was doing the right thing taking him to the doctors and for all the tests.”

Eighteen months later, after several tests, some of which were coming back showing nothing was wrong, a genetic test showed that Freddie is missing the maternal chromosome 15 and he was diagnosed with Angelman syndrome.

“When we found out his diagnosis, a weight lifted off my shoulders,” said Zoe. “But it was also like I’d been punched in the stomach.

“When I fell pregnant and had Freddie I thought it was all going to be OK, that life would be the same just with an extra child, so I grieved for the child I had imagined.”

Freddie’s condition means that he is mentally and physically like a one-year-old.

He will not be able to speak or communicate properly, and although doctors are hopeful, it is not known whether Freddie will ever be able to walk.

However, since his diagnosis he has been seeing a physiotherapist and is learning speech and sign language.

Zoe said: “It can be quite hard, especially other people’s judgement, because he doesn’t look as though anything is wrong so I get funny looks when I park in disabled bays or if he doesn’t respond when people talk to him.

“You never understand until you’re in that situation. It makes you look at everything in a totally different way.”

As part of increasing awareness, a recent fundraiser at The Albion in Willesborough raised enough money for a specialist bed for Freddie.

Zoe said: “Conor and I have been very much like he’s our child – it’s down to us so we can’t say how grateful we really are.

“The bed will make all of the difference and the support means so, so much to us.”

Angelman syndrome is a rare genetic disorder which affects the nervous system and causes severe physical and intellectual disability.

The first signs begin to show at about six to 12 months, when the child shows signs has delayed development such as being able to support themselves or making babbling noises.

Other characteristics include being unable to speak, difficulty walking, being easily excitable, a fascination with water, problems sleeping and even seizures.

People with Angelman syndrome have a normal life expectancy, however they will need constant care throughout their lives.