You have been a godsend! I can’t explain the relief it has given me to know I can get myself straight again and be able to give my daughter all she needs. Thank you for your support.” I’m still living with it. Since I was a little girl, I’ve known it’s there, I’ve known what it’s doing, and I know what every single headache means. I have wrote a blog whereby you Learn about Kirsty’s Story | Neurofibromatosis & Scoliosis which is my journey from when was 9 to the current day. Chloe took on a lot of the burden of dealing with Kirsty’s affairs following her passing, including helping to arrange the funeral and sorting out the council tax. Chloe laments how hard it is having to choose a funeral song for someone when you’ve never even thought to have that conversation because of how young they are. Chloe said: “The only thing I can do now is raise awareness and try and get the message out there. I just want to help people avoid losing their sister and best friend like I have. My main message would be it’s called the Silent Killer for a reason. Sometimes you get every single symptom, and it’s easy for health care professionals to act on it in that situation. But sometimes it might not be obvious and the only thing I would say is when in doubt, go with that gut instinct, because it’s never far from the truth.”

As the manager, I felt like I had to be strong. There were moments during the pandemic where I'd also broken down in tears and didn't think I could do this job anymore. But on this day I put my own feelings aside and tried to be brave for this young carer. Sometimes bad headaches can keep me in bed for a week. I’ll feel the pressure in my head and think ‘not again’. Memory loss is another thing to cope with, forgetting where things are – keys, phone, glasses, anything, everything. Sometimes I’ll be thinking I just held something, and it haven’t had it since last year. A long string of visits to her GP and her Consultant followed but they were unable to resolve the problem, despite carrying out numerous tests. Kirsty’s pain and nausea became so severe that she had to visit the hospital’s A&E department twice in the first 6 months after her operation. These visits were particularly upsetting because despite feeling extremely unwell A&E staff did not do any investigations and just sent her home with medication for acid reflux (which she no longer had) and a reproach that she was wasting their time. I’ve always enjoyed walking so I thought that’s the obvious thing to do. Originally I planned to do the walk over seven days, but each day during the build up to it I was walking six to seven miles, so if I could do that I could do ten miles a day. So that became the challenge. Once that was set in my mind then there was no way I was going to fail. There was the odd time I thought why am I doing this – but immediately I thought of Kirsty and I knew why. Learn about Kirsty’s Story | Neurofibromatosis & Scoliosis over on her podcast as she starts to date and find love – find out how she tells new potential partners about it.

We were given more hope when tests showed the melanoma hadn’t spread much deeper into the skin or to other parts of the body, where it becomes more difficult to treat. This meant that Kirsty would just need surgery to have the melanoma removed. The motivation behind the walk and all the fund raising is to make awareness of the Charity and the tremendous research work it carries out and to raise money to help this research to take place.” – Chris Thanks to your donations of food and funds, things are now getting better for the family, but they do have a long way to go and REACH is continuing to help them with the debts and emotional support.

In 1989, Kirsty did her first major cycle tour, pedalling across Australia where she had spent her childhood. Under the Patient Safety Incident Response Framework (PSIRF) there will be greater engagement with those affected by an incident, including patients, families and staff. Ensuring they are treated with compassion and able to be part of any investigation. Contents

I find it frustrating that a minority of people campaign against cycle infrastructure on behalf of disabled people when so many disabled people are using cycles as mobility aids.