Neve Rees-Burton and mum ease families’ pain

Jan 3 2009 by Chris Robinson, The Journal

A BRAVE youngster and her mum are logging on to a brighter future as they help other families affected by a rare condition.

Little Neve Rees-Burton lives with genetic disorder Jouberts Syndrome, which affects her bodys ability to control and co-ordinate itself.

Mum Joanne was dealt the heartbreaking blow that her daughter could forget to breathe when she was a baby and she spent her early life attached to a specialist apnoea monitor which triggered an alarm.

Earlier this year, the courageous South Shields youngster celebrated her third birthday, despite doctors warning she might never see it. And although unable to talk, the three-year-old attends the specialist Oakleigh Gardens School, in Cleadon, South Tyneside, where teachers are pleased with her progress.

Caring Joanne, 32, has now taken her daughters plight online, helping to set up an interactive support group for Jouberts Syndrome in the UK.

She teamed up with another mother in a bid to help families after originally struggling to find support and advice when her daughter was diagnosed.

Jouberts Syndrome affects 150,000 children worldwide and can also cause sight problems, learning difficulties and physical disabilities.

Mum Joanne, who has now met other families to share experiences, said: It has been a busy year.

The website is there for people to get in touch with, if they want to let off some steam or share some information.

We thought that we would be by ourselves and out on a limb. But it is gradually building up and we have 35 families signed up.

Its nice to know there are people are out there. To know there are families out there with teenage children is fantastic. There is one lady in her 40s.

Neve was offered new hope last year when she was given a standing frame to help with her movement.

Specialists monitoring the youngsters battle are also impressed with how she is improving.

Neve and her mum even took part in the Great North Walk in Newcastle last year where they were the third wheelchair across the finish line.

Fundraiser Joanne, of Horsley Vale, said: Shes doing really well at the moment. She has learned to sit up for about 15 minutes by herself and she is learning to feed herself.

Its fantastic and shes putting on weight like its no ones business. She is also trying to communicate, she shakes her head for no and signs yes.

Its making her try and think about making conscious decisions and choices.

For more information on Jouberts Syndrome visit www.jsuk.btik.com