Living in hope
A SPALDWICK-based charity has raised £10,000 in order to fund pion-eering research into rare and incurable genetic disorders. Little Lemurs was established by Andrea Parker, 36, of Burton Way, Spaldwick, after her son Harry was diagnosed with Infantile R
A SPALDWICK-based charity has raised £10,000 in order to fund pion-eering research into rare and incurable genetic disorders.
Little Lemurs was established by Andrea Parker, 36, of Burton Way, Spaldwick, after her son Harry was diagnosed with Infantile Refsum Disease (IRD) at just 20 months.
Mrs Parker said: "There is a lack of awareness and research into this disease, leaving parents and families feeling lost and isolated.
"Even if a diagnosis is made, information on therapy is often patchy and contradictory, with some parents being told that nothing can be done to help their child."
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Fund-raising events have included a race night sponsored by The Mill House, in Hartford, and an auction of promises. Mrs Parker has also organised her biggest fund-raising initiative so far for next spring, when she will take on the challenge of a 1,000-mile bike ride through France to Barcelona.
The money raised through Little Lemurs will go to Dr Manuela Martinez, a Spanish paediatrician whose pioneering research into metabolic disorders such as IRD has resulted in new therapy for patients.
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On a recent trip to Barcelona to collect Harry's medication, Harry was able to present Dr Martinez with a cheque for £3,400.
The donation was used to purchase a sterile cabin to enable research to be carried out on skin fibroblasts from patients as well as the manufacturers of vital medicines for children like Harry.
There is currently no cure for Harry's condition, but research carried out by Dr Martinez is offering hope to many families, and helping to gain more understanding of the condition.
Future fund-raising events in aid of Little Lemurs include a black tie Christmas dinner at The George, in Spaldwick, and a golf day at Stapleford Park sponsored by Ideal Standard.
INFORMATION: Little Lemurs was set up to help families with children suffering from a group of rare and incurable genetic disorders known as Peroxisome Biogenesis Disorders (PBDS) and to raise awareness and provide funding for clinical research into these conditions. The impact of PBDs on a child and their family is devastating. Many of the major systems of the body are affected, including the eye, liver, kidney, heart and muscles. Infants with the severest form of the condition are severely impaired and will rarely survive the first year of life. To find out more about Little Lemurs, e-mail Andrea at firstname.lastname@example.org