Seven-year-old with rare illness in charity bid
PUBLISHED: 08:03 11 May 2013
A BRAVE seven-year-old girl, suffering from an illness affecting one in 100,000 people, is trying to raise money for a cancer charity which researches it.
Iris-May Farler-Smith was diagnosed with Ollier’s disease three-and-a-half years ago, leaving her with benign tumours all over her body and regularly in pain.
Her mother Sarah said her Iris-May refuses to let her illness get the better of her, and likes to do what any young girl does, especially dancing.
She said: “Iris-May is so lovely and bubbly that to meet her you would never know anything was wrong.”
But despite her infectious personality, she suffers from the little-known Ollier’s, which threatens to stop her from enjoying her main hobbies, such as skiing.
Sarah said: “She has Ollier’s which means she has benign cartilage tumours that grow on and around her growth plates.
“They affect her left side mostly but she has them on both sides. She has them on her hands and arms and her feet and legs.”
She requires medication to manage the pain and it affects all parts of her life, right down to needing special dance shoes and to wear trainers at school.
And she also has to live knowing she is more susceptible to bone fractures because of the tumours.
Iris-May will need an operation to remove the lumps at some point but her family and doctors believe it is best to wait, for fear it will cause complications in the future.
Sarah, who lives in Birch Drive, Churchill, said: “Her team of doctors at Bristol Children’s Hospital are amazing and have decided it is in her best interests not to operate until she has reached puberty.
“If they were to operate (now), they would affect the growth plates and her hands may never grow and they would also damage the nerves which could affect hand function.”
The rarity of Ollier’s unsurprisingly makes dealing with it all the more difficult, despite a relatively quick diagnosis.
Giant steps have been made scientifically in recent years by SCAT skeletal cancer action trust, in conjunction with University College London Hospitals.
Research has revealed it is caused by rogue DNA formed during pregnancy and has links with other bone-based tumours.
Although her lumps are benign at present, there is a 30-50 per cent chance of malignancy making treatment all the more important.
Far from letting it get the better of her, Sarah said her ‘amazing’ Iris-May came to her own decision to do her bit to help.
Her long blonde hair will be cut at a charity event on May 20 with the proceeds going to the charity.
And the hair she has chopped off will be collected up and passed onto the Little Princess Trust, who make wigs for children who suffer severe illnesses.
To donate money, or to find out more about Iris-May and her efforts, visit www.justgiving.com/sarah-Farler-Smith