Nicole like many other children with NF1 had a very lonely and isolated childhood. She had no real friends and was often left on her own. It didn’t help that she was in and out of hospital almost more than she was in school and with learning difficulties she was seen as different. It was heartbreaking, this was on top of struggling with the medical side of a large tumour causing her immense pain and mobility issues.
When Nicole was 14 she found a camp for children with NF in America, this camp was run by the Children’s Tumor Foundation. Nicole wanted to go, so in July 2011 she flew out to Salt Lake City. Nicole found she was the only Brit in the camp and for the first time she felt like she belonged and found her British accent made her rather popular, a far cry from her life back at school in the UK. Because of her new found confidence, self belief and self esteem that she came back with after camp the Childhood Tumour Trust (CTT) was formed so that other children in the UK could benefit as Nicole did in America. Last year we had our very first camper come over from the USA to attend our UK camp!Nicole is now studying Engineering at Manchester Metropolitan University after being told at school she would never get anywhere.
Marnie was 13 weeks old when she was diagnosed with neurofibromatosis type 1 and pseudoarthosis of the left tibia bone. When marnie was 14 months old her left tibia bonebroke. Pseudoarthosis is a bone condition that doesn’t heal without intervention. At 18 months old and wearing a plaster cast Marnie learnt to walk. She wore numerous plaster casts until she was 22 months old when she had an operation where they inserted an extendable rod into her bone to try and help it fuse back together. Marnie had to wear a splint to help protect the bone as it will always be a soft spot. This limited Marnie as to what she could and couldn’t do, basically she hasn’t been able to live her life like a 3 year old should.
One year after her surgery her bone was not showing any signs of healing. Marnie would have to have quite a few surgeries to see if it would fuse back together. Each surgery she would under go only has a 20% chance of working. Rather than put Marnie through all that and her needing an through all that and her needing an amputation when she is 15/16 we made the hardest decision we have ever had to make and opted for Marnie to have the amputation while she was still young. On the 11th October 2018 Marnie had her below the knee amputation. She showed signs of phantom limb pain so they commenced her on Amitriptyline which has helped massively. Before Christmas we brought Marnie’s new unicorn leg home, – at first she was so scared to wear it as she thought it was going to hurt her scar but once she realised it wouldn’t she was happy to put it on. Within a few days she, out of nowhere just started to walk in her new prosthetic. At that point I realised we definitely had made the right decision for her. She is such a happy and bubbly little lady and doesn’t let anything hold her back. Marnie has had an MRI scan of her head and spine which has come back fine. She has a suspected tumour in her right shin. Marnie goes to nursery and she is loved by all as she is just so happy all the time. Marnie knows her poorly leg had to be taken away and now with her new leg she can do whatever she pleases and her whole life is ahead of her.