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Bethany amazes despite her illness

PUBLISHED: 05:43 30 January 2003 | UPDATED: 16:13 24 February 2010

LITTLE Bethany Tayla Woods captures the hearts of everyone she meets.

The beautiful 17-month-old was born with a rare form of muscular dystrophy which it is thought affects just 50 children in the world, but still amazes her family and friends with her spirit.

LITTLE Bethany Tayla Woods captures the hearts of everyone she meets.

The beautiful 17-month-old was born with a rare form of muscular dystrophy which it is thought affects just 50 children in the world, but still amazes her family and friends with her spirit.

The form, known as merosin negative, means she has a low level of the protein in her muscles which stops her from being able to support her weight by standing or sitting up unattended.

Despite her daily challenges, Bethany is as lively as any other baby of the same age and is happiest thrashing the keys of her older brother's piano.

Parents Treena and Kevin from Cecil Close, Ipswich, and close friends and family are desperately trying to raise funds to give the toddler the best quality of life possible.

Bethany, who has a six-year-old brother called Ryan, was not diagnosed with the condition until May last year.

Mrs Woods, 28, said doctors first noticed something was wrong the day after she was been born.

"One of the paediatricians came round and said she was floppy. They then got another paediatrician who came along to have a look at her and he said she was fine and could go home," she said.

"At this time we noticed one of her hands was positioned awkwardly and one of her feet was turned in. The midwives kept an eye on her and eight weeks later a doctor came round and said he wanted her referred to the hospital and it all went from there really."

Bethany had to undergo several tests and an MRI (magnetic resonance imaging) scan before doctors discovered she had a high level of protein in her muscles.

"The only way to find a diagnosis was to have a muscle biopsy at Addenbrooke's Hospital," said Mrs Woods.

The biopsy was carried out last April and the final results came back in May when Bethany was diagnosed as having congenital muscular dystrophy merosin negative.

"We are not sure what the exact amount is but from what we have heard there is only 50 people with it in the world. We have found somebody in India and one in America," the mother said.

"It's caused by what we are led to believe is a gene that I carry and a gene my husband carries. It's such a rare thing to happen.

"Obviously a typical 17-month old baby would be running around and be into everything but she will never be able to walk. She will be in an electric wheelchair.

"She has extreme low muscle tone and that stops her from sitting upright. There's nothing mentally wrong with her at all."

The couple are planning to adapt their house to cope with Bethany's needs by building an extension with a downstairs bathroom and bedroom because she will not be able to climb upstairs.

They also need specialist equipment including a car seat, an electric wheelchair, a car large enough for the car seat and a computer so that she is able to write.

Mrs Woods' brothers Peter and Gary Nunn are now busy organising various fundraising events for the little girl, including a fun day at the Ship Launch pub in Cliff Lane in May and a ball.

Several businesses have already donated prizes for a draw which will be held at the fun day.

Anyone wanting to help can contact Mrs Woods on 01473 252133.

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