Woman to take on wingwalk for charity in memory of daughter and father

People celebrate milestone birthdays in a number of ways. Some have parties, others go out for meals with family and friends, Tricia Stephens has decided to make her 75th birthday with a wingwalk in memory of her daughter.
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Tricia, who lives in Petworth, is doing the wingwalk for charity Nerve Tumours UK.

Her daughter Sarah Long was diagnosed with Neurofibromatosis Type 1 (NF1) soon after she started school.

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Tricia said: “At the time when Sarah was diagnosed there was no special nurse or national support available. Sarah didn’t have access to such help.


“Most people had never heard of it and the only information available to us was a list of technical medical notes on two sheets of photocopied paper, given to us by a paediatrician. They meant nothing to us.”

Sarah passed away on March 14, 1998 aged 24.

Neurofibromatosis (NF) is one of the world’s most common neuro - genetic conditions.

Markus Bell, from charity Nerve Tumours UK, said: “The effect on families is devastating, more so because they are unlikely to have heard of NF before diagnosis and won’t know where to find help. (More people have Neurofibromatosis than Hereditary Muscular Dystrophy, Huntingdon’s Disease and Cystic Fibrosis combined).

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“Categorised into NF1 and NF2, the severity of the condition will vary from person to person and whilst some may live a normal life, others of those with NF could have a multitude of medical, physical, and psychological conditions.”

The charity states that 26,500 people are affected by Neurofibromatosis in the UK. It estimates that one in 2,500 people in the UK have Neurofibromatosis Type 1 and one in 35,000 people in the UK have Neurofibromatosis Type 2.

Nerve Tumours UK, provides support, advice, and information for both those diagnosed with NF, and the medical professionals involved in their care, as so few medics have heard of, or witnessed, the condition, providing access to a specialist Neurofibromatosis nurses network and the national helpline.

Tricia is also undertaking the wingwalk in memory of her father Keith Landers Boon, who didn’t have the condition.

To donate to Tricia’s page, visit justgiving.com/fundraising/tricia-stephens