Twins beat the odds

A FAMILY has celebrated the 27th birthday of twins they were told were unlikely to survive their teenage years.

Thomas and Charlotte Rick–ett, of Farnsfield, were born on Christmas Eve 1986 with the life-limiting illness Sanfilippo syndrome.

The condition means they need round-the-clock care, but their mother, Mrs Dallas Rickett, of Farnsfield, said: “They are brilliant children. They are like chalk and cheese.

“Charlotte is an extrovert. She has a wicked sense of humour and there is always a twinkle in her eye. Thomas is quieter and has a really gentle nature.

“They are both very loving and I get lots of cuddles.”

Not long after their first birthday Dallas noticed the twin’s progress was slow but experts put it down to delayed development from a premature birth.

Thomas and Charlotte had more tests but it wasn’t until they were seven that their condition was diagnosed.

Sanfilippo syndrome is a rare genetic disease resulting from the body’s inability to break down and recycle long chains of sugar molecules.

Babies show normal traits but by three their development slows. Between the age of two and five, they rapidly decline mentally and physically and are not expected to live past their 20th birthday.

Mrs Rickett, 57, said: “Myself and my husband, Steve, were devastated with the diagnosis but deep down I had an instinct that something wasn’t right and I knew it was going to be something bad.

“The twins became like whirlwinds as part of their condition made them hyperactive. They then rapidly started to decline mentally and physically and all of the skills they learnt as small children were lost.”

By the time they were 11, Thomas and Charlotte were unable to talk fluently. When Thomas was 21, he was confined to a wheelchair. Charlotte spends most of her time in a wheelchair but she is still able to walk at times.

Both twins have swollen joints and Thomas has epilepsy. They are unable to feed themselves and require 24 hour care. Thomas also has kidney problems and has a special diet and dialysis every night.

The twins have been visiting Rainbows Childrens Hospice in Loughborough since 1995.

Mrs Rickett said: “We only have Rainbows. We have no family to help us out.

“The only back up we have if anything goes wrong is Rainbows. Rainbows is our family.

“Eight years ago I was diagnosed with breast cancer and Rainbows supported me through that as well.

“I am all clear now but Rainbows takes the whole family on board and they understand.”