Hi, we are Graham and Shirley. Thank you for reading our urgent appeal to help our beautiful 11-year-old daughter, Lucy, to get the life-saving surgery she needs. Our lives were turned around on 7th May 2025...

Summary:

Lucy is living with a life-threatening condition called Arteriovenous Malformation (AVM) which means an aneurysm in her spinal cord could rupture at any given moment. With no options to safely operate here in the UK due to the rarity of spinal AVMs and the risk it could leave her permanently paralysed from the neck down, our only option is to travel to the USA. The world expert surgeon in AVM removal, Dr Lawton from Barrow Neurological Institute in Phoenix, Arizona, believes that he can safely remove Lucy’s AVM with minimal damage to her spinal cord.

However, we urgently need to raise a significant amount of money to cover the treatment, travel, subsequent rehab costs involved and potential adaptations to our home. We’ve thought long and hard about asking for your help to give Lucy this life-saving opportunity, but we are on a grand mission to save our kind, bubbly, bright daughter who is currently unaware of the severity of the current situation.

She has already suffered one devastating and life-changing aneurysm rupture in her spinal cord and has spent many months in hospitals working hard to breathe by herself and to regain some of her mobility and motor skills, needing 24-7 care. We are now in a race against time to raise the money that will give Lucy this surgery before the new aneurysm ruptures. Thank you for helping us to save our little girl.

Our full story:

Our beautiful daughter Lucy was taken into Southampton General Hospital on 7th May 2025 by ambulance after collapsing on school trip. Heavily sedated and intubated, it was unclear what was wrong with Lucy for the first 10 hours. When Lucy woke up, she could not feel or move any part of her body below her shoulders. It was concluded that Lucy was born with an extremely rare condition called an Arteriovenous Malformation (AVM) in her spinal cord at C4 and an aneurysm had ruptured, resulting in a long blood clot from C3 to T3 causing spinal cord damage.

What’s an AVM?

An AVM is a tangle of weak blood vessels which is a defect that usually causes aneurysms. You can find an AVM anywhere on your body and is more commonly found in the brain. We were told that this condition is extremely rare, affecting just 5 to 10 people per million a year and even rarer in children. By the time you realise you are born with one in your spinal cord, it is usually too late as there is usually no sign of the AVM leading up to a rupture.

When Lucy came into hospital, the remaining aneurysms were successfully embolised. Unfortunately, the AVM could not be taken out, as there would have been a high risk of Lucy becoming permanently paralysed from the neck down and on oxygen support for life.

Rehab

After 13 weeks at Southampton General Hospital and 12 weeks at Stoke Mandeville Hospital for intensive rehab, Lucy has worked extremely hard to learn how to breathe again, to cough, to sit up, to stand and even to walk again. This meant that Lucy did not have any rest and physically worked through May half term and the whole summer holiday to re-establish a connection from her brain back to the rest of her body.

Knowing Lucy

Lucy is kind, smart, sociable and has a fantastic dry sense of humour. She is incredibly bubbly and loves swimming, climbing, trampolining, playing guitar and arts and craft. Sadly, her upper arms and hands have suffered the most, which now have limited function. As a tetraplegic, Lucy cannot do most of the things she used to love. Lucy requires 24/7 care from us, as she has lost a lot of her independence. Since 3rd June 2025, one of us would catnap next to Lucy to help her adjust her pillow, duvet, give her water and generally make her comfortable throughout the night. It has been particularly hard for Lucy mentally and emotionally too, to be missing school for so long and not being able to socialise with her friends easily. We have been blessed with such fantastic support from Lucy’s school, friends and family and community throughout our journey. Being apart from her older sister has been the biggest struggle for Lucy as they are very close.

Recent Diagnostic

What should have been a Christmas holiday away at Rockley Park’s Haven in Dorset, ended up being two days at Poole Hospital on 24th and 25th December 2025. Lucy had discomfort with her right leg. It felt numb, tingly and pins and needles. On 2nd January 2026, following another angiogram at the University Hospital Southampton, we received the devastating news that there was a new and large aneurysm growing in C3 in her spine. This time it cannot be embolised as it is too difficult to reach. We were told that the aneurysm and AVM are inoperable, and if we do surgery in the UK to remove them, Lucy is likely to be permanently paralysed from the neck down and require oxygen support for life. We felt like we were being forced back to 7th May 2025 with such heartbreaking news. Lucy cannot have worked this hard and sacrificed so much to be back at square one. Despite her limited function right now, Lucy has been happy and never complained about life being unfair or why can’t she do certain things right now. No-one should have to go once, let alone twice.

Spinal AVM Surgical Removal

We were told by an NHS consultant that the UK has very limited experience with surgically removing AVMs, as it is such an incredibly rare condition. No-one in the UK can say they have even a fair amount of experience with it. We now know that once ruptured, the AVM is likely to rupture again and again, paralysing Lucy every time and putting her back to rehab. But with constant damage, Lucy will lose more and more of her function with every rupture. With this shocking news, we have found the current world expert surgeon, Dr Lawton from Barrow Neurological Institute in Phoenix, Arizona who specialises in AVM removals. It is good news! He believes that he can remove Lucy’s AVM safely with minimal damage to her spinal cord.

Urgency

We are not sure when this new aneurysm will rupture again. Therefore, we must do everything possible to save our delightful little girl’s life. We believe Lucy will do great things when she grows up, something that will make a difference to the world. Please give this opportunity to Lucy to enable her do this. The money raised will facilitate towards Lucy’s surgery abroad, rehab, treatment, recovery and possibly home adaptations. Thank you.

Thank You

May we take this opportunity to thank the following: