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Amelie with mum Anne []

The youngster from Elland, West Yorkshire, who stands 2ft 9in tall and weighs 23lb was born with a rare chromosome disorder called Russell-Silver syndrome (RSS) which has severely affected her growth and mobility. She has endured four major operations on her hips and has spinal scoliosis – a curvature of the spine – that is likely to complicate her treatment.

The condition also affects her appetite and although she tries to eat Amelie is fed through a tube in her stomach 20 hours a day to ensure she gets enough nutrition.



She wears clothes that would fit a nine-month-old baby and when she started primary school in September her uniform had to be specially made. Yet she is rarely without a smile.

“She melts everyone’s hearts but it is heartbreaking for us,” says her mother Anne, 38. “We would love for her to be able to run around like other children her age.”

Although Amelie is currently under the care of 18 doctors and specialists in five different hospitals Anne and husband Jon, 42, have been frustrated by the lack of answers to their questions about their daughter’s condition since it was diagnosed in January last year.

Only one in every 100,000 children suffer from RSS and it varies in severity. The cause isn’t known and it is not thought to run in families.

“I’ve spent hours researching it on the internet, looking for information, help, support, anything that might help us understand Amelie’s condition and the kind of future she might have,” says Anne. “Her hip and spine problems are a particular mystery as they are not symptoms usually associated with RSS.”

In desperation Anne and her family went to America to see Dr Madeleine Harbison, a paediatric endocrinologist specialising in children with growth problems who has dealt with more than 300 RSS patients.

Their emotional journey is captured in a documentary to be screened next week.

Dr Harbison believes that as well as RSS Amelie has Ehlers-Danlos syndrome, a lack of collagen in the connective tissues which makes it difficult for her bones to stay in place. Dr Harbison has warned that unless Amelie is given growth hormones she may never be taller than 3ft 6in.

Anne, who works part-time as a paediatric nurse, says: “Initially I was shocked that Amelie had another condition to worry about even though it finally explained her hip and spine problems. To know that she might never grow above three-and-a-half feet without intervention was devastating.

“Jon and I feel we are in a race against time as the earlier children are given growth hormones the more effective they tend to be.”

Hormones are successfully prescribed to 90 per cent of children in the US who suffer from RSS. Some have grown to 5ft 6in by adulthood.

While they were in America Anne, chartered surveyor Jon and their other daughters seven-year-old Abby and Georgie, 11, went to a convention organised by The Magic Foundation which offers support for families with children suffering from chronic growth disorders.

“It was so wonderful to meet people who could offer advice and understand our frustrations. I didn’t want to leave because for the first time I didn’t feel like we were in the dark and dealing with this alone,” says Anne.

Before Amelie can be given growth hormones she will need surgery to straighten her spine. She is due to see an orthopaedic surgeon at the Royal Manchester Children’s Hospital in January to discuss what happens next.

“We do feel a sense of urgency because we want to give Amelie the best possible chance of growing. We’ve even discussed moving to America so she can be treated by Dr Harbison but it’s just not feasible,” adds Anne, who admits Amelie’s condition has taken its toll on the family.

Because she is so tiny Amelie has to be carried up and down stairs in case she falls and still wears nappies because of her stomach and bowel problems which Anne believes may be linked to the Ehlers-Danlos syndrome although this has yet to be confirmed.

“It’s incredibly hard to divide my attention fairly between my children. I can be helping Abby with her homework and have to break off because Amelie needs me too,” says Anne. “School holidays are tricky because there isn’t a place that’s suitable for all three children to go together. I do get someone from social services to come in an hour a week and that enables me to spend a bit more time with my other daughters.”

Thanks to local fundraisers and a local council grant the family has been able to instal a sink that can be lowered and light switches at a height Amelie can reach.

“She can’t reach her coat peg at school but they have made a special tray for her, fitted on to the mobile highchair she uses which means she can be pushed along in the dinner queue and choose her own lunch like everyone else.