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Tricia’s Wingwalk and Birthday Fundraiser for Sarah and Keith

24 September 2021

In this day and age any excuse for a celebration is a good thing and remaining on this planet for three quarters of a century seems like a good one!

I am celebrating in several ways including a challenge:

I am going to do a wing walk in memory of my daughter, Sarah Long (1973 -1998) who was diagnosed with Neurofibromatosis Type 1 (NF1) soon after she started school, and to remember my father Keith Landers Boon (1913-1996). Known as ‘Dan’ to many he was a pilot for a number of years and passed away just a few months before my half century. He didn’t have NF.

I think both would approve of my challenge.

My father flying up the Red Sea in a Wellington 1943

Sarah with my father when she was two

Reflections: My family's experience with Neurofibromatosis and Nerve Tumours UK over the years

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

The charity - known as the Neurofibromatosis Association when Sarah passed away - had not been formed when she was first diagnosed. 

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.

Teachers knew nothing, her friends knew nothing and this made Sarah’s life very difficult for her as she grew up. She was not very visibly affected as most of the progression of the condition was going on way beneath her skin.

Sarah’s medical problems really started when she was at university and living in Brighton. She began to find walking difficult and had pains at night. They got worse over a period of nearly three years. Sarah saw five different doctors during that time and none of them would believe it was anything to do with NF.

Eventually, when she was in her first full time job, and she could not sleep at all at night and it was affecting her work, she phoned the specialist advisor in Guys Hospital who advised her to get a referral from her doctor. At first he refused but eventually gave in after she left his surgery in tears.

Within a couple of weeks, in August 1997, Sarah had two sizeable nerve tumours removed from her sciatic nerve in her thigh and calf. They were found to be malignant. The operation damaged the sciatic nerve and she lost all feeling in her lower leg and foot. This was never regained and she had to wear a splint.

During the next few months she was back and forth between work and hospital and was told in January 1998 that the cancer had spread to many organs in her body and there was nothing else that could be done.

Sarah passed away on 14th March 1998 aged 24.5 years – the evening before her sister’s 21st birthday.

Sarah was a Christian and had strong Christian beliefs and this enabled her to cope with the situation. She believed that God could cure her and if he didn’t, then he had another purpose for her.

We do not have any family history with NF and her case occurred totally out of the blue. Her passing has changed all our lives and I think every day that if more had been known about NF all those years ago, she might be alive today.

Please help me bolster their support.

I want every area in the country to have a specialist nurse and there are some big gaps.

If Sarah had such access I believe that she could have been alive today.

The charity has come such a long way. Please help it to expand more so that every family affected by NF can have easier access to an appropriate care package and will be properly looked after.