Martin Toland

Toland family fundraiser for Cavernoma Alliance UK

Fundraising for Cavernoma Alliance UK
£7,215
raised of £6,000 target
Theo-athlon 2025
Cavernoma Alliance UK

Verified by JustGiving

RCN 1197257
We raise awareness of cavernoma to improve the lives of people affected

Story

Thanks for taking the time to visit our JustGiving page. As many of you will know, in May 2024, just after his 11th birthday, our wonderful son,Theo, was rushed to hospital following severe headaches, vomiting and confusion. Doctors eventually discovered a large mass and bleeding in his brain. Theo was transferred to the amazing John Radcliffe hospital in Oxford emerging three months later having undergone a total of thirty hours of life saving brain surgery and having relearned basic skills such as walking and feeding himself several times.

The cause of it all was a Cavernoma; a small malformation of blood vessels that, in his case, were bleeding within his brainstem and had formed a blood filled cyst that was causing the brainstem to deform and pressure to build in his brain.If not addressed this would have ultimately had fatal consequences and it took three operations over a period of 3 weeks to remove the source of the bleeding and drain the cyst. The surgery was followed by a long period of rehabilitation including physiotherapy and occupational therapy to help him regain strength and mobility. While his rehabilitation is not over and he has been left with permanent deficits, including a significant acquired brain injury, he is doing incredibly well in his recovery and wants to do something positive after what has been a very challenging time. Theo's strength and determination are an inspiration to us all.

A cavernoma is a very rare condition with approximately just 160 people per year in the UK diagnosed with a symptomatic cavernoma. A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. Cavernomas are also known as cavernous angioma, cavernous haemangioma or cerebral cavernous malformation (CCM). They can measure from a few millimetres to several centimetres. There is not a lot of information to help patients and their families but very early on we were directed to the Cavernoma Alliance UK and the resources and details they provide helped us to understand what Theo was dealing with and what support was available.

To raise money for the Cavernoma Alliance UK, Theo is doing a Theo-athlon with a walking, swimming and wheelchair component as he works through his recovery. He will be supported by Sophie, Evie and me who will each do one leg of his challenge with him as well as taking on a related challenge of our own. Theo's events will be extremely challenging for him given his reduced mobility and disability but he is excited to get started!

He will be walking ten laps of a football field with Sophie, who will also be doing a daily walking challenge to do the equivalent of Land's End to John O'Groats, approximately 603 miles.

Having lost a great deal of power on his right side, Theo will be learning how to swim again with the challenge to complete 2 lengths of the swimming pool with Evie. Evie will also be adding up the lengths every week across 2025 to achieve the 1352 lengths required to swim the Channel.

The final challenge is wheels and Theo will self propel in his wheelchair one mile with me pedalling alongside before I complete a 100 mile challenge which is the journey from home to the John Radcliffe Hospital in Oxford and back.

Cavernoma Alliance UK are a small charity who need our support to meet their strategic goals- to find a cure for cavernomas by 2030, raising awareness and supporting families along the way. We had never heard of cavernomas before Theo was diagnosed and we want to support the charity to reach their goals to ensure no other family has to deal with the devastating effects of a cavernoma. Theo's life has been changed forever, but we are determined to do what we can to enhance future research and support for those impacted by cavernomas. We appreciate any donations you are able to give to support Theo in his challenge.

Thank you! We will be updating the page regularly with everyone's progress.

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About the charity

Cavernoma Alliance UK

Verified by JustGiving

RCN 1197257
Cavernoma Alliance UK (CAUK) supports people affected by cavernoma. A cavernoma is a common but often unheard of condition caused by a cluster of abnormal blood vessels in the brain or spine. Our mission is to improve the quality of life for those affected through education, support and research.

Donation summary

Total raised
£7,214.78
+ £1,452.15 Gift Aid
Online donations
£7,214.78
Offline donations
£0.00

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