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We will be walking the historic Pilgrim's Way in reverse from Canterbury to Winchester, which will take approximately 10 days. This is all for the Nerve Tumours UK, which is a charity that is incredibly close to our hearts as Jem's gorgeous 9 year old granddaughter Lilly has Neurofibromatosis type 1 (NF1). Any sponsorship would be massively appreciated to help us reach our target. When Lilly was born she had a few bruise like patches on her face and a little lump in her fontanelle. Her parents kept an eye on these but nothing really came of it. When she was 12 months old they became aware that the lump on her head had got slightly bigger and was now stopping her skull from fusing. It was decided after numerous hospital visits that it needed to be scanned and operated on so at the age of 16 months old, Lilly underwent surgery to remove the lump. It was sent away for testing and was thankfully, benign. As she got older some pale patches started appearing over her body and dense areas of freckling on her neck, in her arm pits and in her groin. My daughter Sarah and her husband Pete decided to follow this up as it was noticeable that they were appearing quite rapidly. After what seemed like months of hospital visits, genetic testing, blood tests and scans, Lilly was diagnosed with neurofibromatosis type 1 at the age of 5.
Neurofibromatosis type 1 is a genetic condition, that can be hereditary but in Lilly's case was simply a chromosome abnormality that occurred when she was developing in the womb. It causes little tumours to develop on her nerve endings that can lead to pain in her limbs or around her lymph nodes. It also causes the appearance of cafe au lait patches and large amounts of freckling, particularly around the lymph nodes, primarily neck, arm pit and groin. Lilly has to have regular hospital check ups to assess her spine as the condition can cause scoliosis in some cases. At these appointments she also has in depth eye exams to check the nerves at the back of her eyes for any changes. She has had some challenges with balance and coordination meaning it has taken her longer to ride a bike and she needs some help in coordination areas at school. She can have social and behavioural challenges as well. We are delighted that Lilly is continuing to grow and develop so well and we are incredibly proud of her resilience. Despite it being a huge challenge, she is now able to ride her bike and is doing well at school. As she grows up there is no way of knowing in what ways the condition will affect her in terms of lumps and bumps that can appear on or under her skin, nerve pain or other changes. She has had two trips to Guys and St Thomas in London as a new lump appeared under Lilly's arm. Thankfully she was discharged but it is something that may occur frequently and need checking. When Lilly was diagnosed, we, her family, had never heard of the condition at all, despite it being more common than cystic fibrosis. When her parents speak to other people, there isn’t always an understanding as to what it involves and the challenges she will face, they have had to invite the NF nurse to Lilly’s school to offer support. Nerve Tumours UK do an incredible job and with fundraising and sponsorship, the research into treatment, guidance and maybe one day, a cure may be possible. Funding can also enable more NF nurses to be able to go into schools and teach staff and children about Neurofibromatosis. Neurofibromatosis is a condition Lilly will live with and her family will tackle each hurdle if and when it presents itself. Lilly is an incredible, loving and caring little girl with a heart of gold. We couldn't be more proud of the young lady she is growing into. Please donate if you can and help us make it possible to fund further research.
Jem