"Help Bridie Walk Again: A Life beyond Leukaemia"

Our pledge surrounds a story that spans nearly 20 years, starting in 2005. My sister, Bridie, who is now 33 years old is still suffering with the catastrophic effects of leukaemia she had as a teenager - we are asking for your help to fund specialist leg amputation surgery.

Bridie was 14 when she first fell ill with what seemed like a persistent flu, but after collapsing while having a blood test at our local hospital, she was rushed by ambulance to UCLH in London, where she woke up on a teenage cancer ward. It was there that we learned she had leukaemia—a diagnosis that turned our world upside down.

She spent almost a month in that ward, undergoing chemotherapy and receiving emergency blood products. Our family, including me, our oldest brother Jake and our Dad traveled to London daily from our home in Kent, with our mum staying by her side the entire time. Once she stabilised and could return home, her life revolved around her hospital appointments and regular chemotherapy. She left school and remained in close contact with only a few friends, who remain her best friends to this day. Chemotherapy was grueling, leaving her reclusive as she battled infections, nausea, and hair loss.

A few months later, we received the worse news we could hope for: her disease hadn't responded to the treatment, and a bone marrow transplant was her only chance of survival. We all got tested to see if we could donate our own bone marrow, but none of us were a strong enough match. Thankfully, an anonymous donor was found through the Anthony Nolan Bone Marrow Register. She was admitted to The Royal Marsden in Surrey for the transplant, undergoing intense pre-transplant conditioning with high-dose chemotherapy and radiotherapy to eliminate her bone marrow.

September 8th 2005 was the day she finally had her transplant and was placed in protective isolation for a month with no family or friends allowed to visit her because of the infection risk. Good news followed when we learned the donor graft started to take hold, and her new immune system began to develop. We all celebrated the day she came home, although she was still very fragile and had to be monitored closely over the coming weeks and months.

Over the following year, although technically cured of leukaemia, she faced severe side effects from graft-versus-host disease (GvHD) - which is where your body has a bit of a battle with the donated bone marrow. She caught frequent infections needing hospital admissions, she suffered weight loss so severe she had to have intravenous nutrition at home which she set up herself each night before bed and painful skin deterioration. Bridie went on to endure life-threatening complications, including sepsis and a superinfection of her lungs where she stayed in the paediatric intensive care unit for nearly three months needing a ventilator to help her breathe. We were all told at this time that this might be the end. But as miracles go, she recovered with the knowledge and skills of all the doctors, nurses and physiotherapists that treated her - this is something that inspired Bridie to become a children's critical care nurse herself.

After surviving these challenges, she came home from the intensive care unit the day before her 16th birthday in 2006 and we celebrated her birthday at home, together. Bridie was a frail shell of her former self but put a lot of time into rehab and recovery.

By early 2007, she was regaining her life but soon faced another setback. The life-saving treatments (predominantly the high doses of steroids she had been given to treat the graft-versus-host disease and her pneumonia) had caused her bones to deteriorate, resulting in a diagnosis of Avascular Necrosis (AVN) in her ankle, knee, hip, and spine - a painful bone disease caused by a disruption of blood flow to the bones and joints.

Despite facing this challenge, she pursued her education, desperate to get her life back, eventually studying health and social care at college. However, her avascular necrosis progressed, leading to surgeries and prolonged recovery periods which ultimately lead to a chronically painful and deformed leg and she walked with a painful limp.

She was still determined to just live her life and make a difference, so she moved to Devon to start her paediatric nursing training at university. She faced continuous struggles but persevered, graduating with a degree in paediatric nursing in 2014.

She moved back to Kent and began her career as a nurse in a children's intensive care unit in London. Several years later her and her partner, Tommy, moved to Cornwall, having fallen in love with the southwest while at university. Together they adopted a border collie and enjoyed their life, walking their dog on the moorlands and beaches of cornwall.

In 2020, she and her partner welcomed their first child - a now 4 year old, bright and happy girl called Mary.

However, soon after her condition worsened and her bone pain became debilitating. She had further surgery to her leg which was unsuccessful and has worsened the pain and function further - she can walk only very short distances using a walking stick. Life as a young mother to an energetic and bubbly four year old is hard enough at the best of times, but for Bridie, she is unable to do the simple things like take her daughter for a walk to the park or go for a bike ride together.

So now, she faces the prospect of a below-the-knee amputation to improve her quality of life and mobility. After seeing several surgeons, and meeting her local prosthetic team, it’s clear that this procedure is her best option, as any attempt at further reconstructive surgery would be prolonged and staged over several years and, ultimately, unlikely to be successful due to the nature of the avascular necrosis.

Bridie has worked hard to accept this and remain positive throughout and was placed on the NHS waiting list in July 2023. However after nearly a year of waiting, she discovered the possibility of having a specialist amputation with Targeted Muscle Reinnervation (TMR) - The goal is to raise funds for this specialist surgery under a pioneering team in London which is unavailable on our national health care system.

TMR is complex nerve surgery performed at the time of amputation, rather than severing the nerves, surgeons meticulously ‘re-route’ and transplant them into target muscles in the upper leg, which tricks the brain into thinking that the lower leg and foot are still there. The aim is to reduce the debilitating phantom limb pain (PLP) and neuroma pain (NP) that 50-80% of amputees experience to a 5-10% chance. Bridie has been told that this is as low as the risk can be made with current surgical techniques. Furthermore, there is evidence that the outcome is better when having Primary TMR as opposed to Secondary TMR - that is TMR at the time of amputation rather than later as an established amputee.

In June, Bridie had a consultation with the surgeons who are pioneering TMR in the UK and was told this would be a viable option and in their opinion would benefit her greatly. However it comes at a cost of £34,100 for the surgery alone. We are hoping to raise this amount plus extra for costs associated with travel (500 mile round trip) to appointments, accommodation for her partner whilst Bridie has the surgery and some rehabilitation equipment and home adaption such as a wheelchair and a temporary stair lift for her home while she recovers.

My sister has spent nearly 20 years in chronic bone pain and wants to take the option that will leave her with the highest chance of a pain-free and functional outcome so she can enjoy life with her family - normal everyday life which alot of us take for granted.

She now works as a Sister in a Children's High Dependency, but she has been restricted to office duties only for the past year and a half. Her employers are supportive, but this can’t go on forever and is only a temporary measure while she waits and recovers from surgery. This has been hard on Bridie too - the career that she worked hard for became another thing that was taken away by the effects of her teenage cancer - this is also something she is looking forward to resuming.

Her journey has been incredibly challenging, but we remain hopeful that this surgery will give her a chance at a pain-free and fulfilling life - the life she would dream of having while she fought cancer. She dreams of walking her daughter to school and living without the constant pain that has plagued her for nearly two decades. Bridie missed out on a lot of her youth but despite everything, her resilience and determination continue to inspire us all.

Thank you for your time in reading this and we wish you all the best. Your contributions are massively appreciated

Best Regards

Paul and the Borrell Family

Resources / Website links:

TMR surgery - https://relimb.org/tmr-surgery

Bone marrow transplant - https://www.nhs.uk/conditions/stem-cell-transplant/

Graft versus host disease - https://www.lls.org/treatment/types-treatment/stem-cell-transplantation/graft-versus-host-disease

Avascular necrosis. - https://en.m.wikipedia.org/wiki/Avascular_necrosis