THE family of a toddler with an undiagnosed neurological condition want to raise awareness of the difficulties people in their position face.
Leanne Key-Warburton, 28, and husband Steve, 29, from Stamford, welcomed their son Archie into the world on Christmas Day 2009.
Archie was born with a condition which affects his movement, co-ordination and speech.
He has been tested for more than 500 different conditions but doctors have so far been unable to diagnose his problem.
All they know is that his brain is too small, but they do not know why. Archie is currently being tested for Pelizaeus-Merzbacher Disease, which affects at most one in 100,000 people.
He has symptoms like those of cerebral palsy sufferers and needs expensive sensory equipment and special chairs and pushchairs to support him.
Leanne, who cares for Archie full time, said: “We are starting to fundraise now. We want his time in the day to be as stimulating as possible. We want to raise money for communication devices when he gets older.
“It’s very expensive for toys and things to simulate him. Something that is £10 in the Early Learning Centre would be £50 for Archie. Pushchairs cost £2,000.”
Paying for equipment to help Archie is just one part of his family’s problem. Leanne added: “It is so difficult because we don’t know what we are raising money for.
“But people want to do something for Archie. It is so frustrating, we don’t know how long his life expectancy is or anything.
“I want to raise awareness of children with undiagnosed conditions and how difficult it is for their families. It is very frustrating because we don’t know how to help him.”
Thankfully Archie has an incredibly supportive network of family and friends.
Leanne and Steve were surprised by two friends, Steve Sowerby and James Kantas, who took part in a 12-mile endurance course called Tough Mudder. The pair raised £800 in sponsorship and donated it all to Archie and the family.
Steve works as an electrician at Lands’ End in Oakham and the firm has raised about £2,000. Archie’s auntie Kim is trying to organise a charity ball.
The Jane Tyler School of Dance in Kettering did a show in support of the family while they were in the audience. Friends, including Jem from Stamford dance school Jem’s Hip Hop, are hoping to do a skydive next year.
Archie’s sisters Pheobie, six, and Gracie, four, who dance with Jem’s Hip Hop, are keen to organise something to raise funds. And Leanne has had offers of help from other mums at her daughter’s school, Malcolm Sargent Primary.
Leanne said: “I have got fantastic friends and family, the support has been great.
“People have raised about £4,000 now, which is going to go a really long way.
“His sisters are amazing with him. People say they have never seen a bond between siblings like they have together.
“Archie is really special and we are glad we have him.
“I want to let everyone in the community know about him.”
If you would like to help Archie, e-mail Leanne at firstname.lastname@example.org