Weʼre raising £30,000 to Donate to Histio UK to help with the amazing work they do in supporting those affected in by Langerhans Cell Histiocytosis.
- Rugby, UK
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On 9th August 2017 my 1 year old son Albie was diagnosed with the rare and life threatening condition Langerhans Cell Histiocytosis (LCH). Several months before his diagnosis Albie had changed from a normal, happy boy to a completely different child, a child who shied away from any contact, interaction or activity. Only later did we realise it was because he was in almost constant pain and discomfort.
LCH is a condition which affects less than 50 people per year in the UK, most of these are young children. It is caused when the body produces too many of a specific type of white blood cells - those cells can then build up in certain parts of the body and produce tumours and damage to organs. Treatment for LCH is mainly through chemotherapy and steroids, and whilst in most cases patients with LCH will survive, you can develop long-term side effects such as diabetes insipidus, stunted growth, loss of teeth, bone defects, hearing loss, or neurological problems.
In Albie's case the damage is to his skin and bones, and he is currently undergoing his second round of chemotherapy. The LCH is still evident in his scans and tests and he will continue to receive intervention, but the treatment he has already received has been life-changing - he is now starting to enjoy the life he has missed out on for the past 12 months.
The support we have received as a family from the NHS and various charities has been invaluable - without them we could not have been where we are today. Because of this we would like to give something back. Histio UK is a small charity which supports those affected by LCH. It is the only UK based charity specifically set up to help sufferers of LCH and we would like to offer them our support in return. For more information please visit HistioUK.ORG
In 2019 Albie's Dad, three of his uncles and a close family friend will be setting out on the toughest challenge of their lives - climbing Mount Kilimanjaro, the highest freestanding mountain in the world. Carl, George, Will, Steven and David will be attempting the Lemosho route which begins on the western side of the mountain and takes around seven days.
Because this is such a tough challenge the lads have set out the rest of 2017 and 2018 as a training period, which includes climbing Snowdon, Ben Nevis and Scafell Pike, along with plenty of hiking at various sites around the U.K. This began on Sunday 29th October when they navigated the Miners Trail at Snowdon, reaching the peak in 3.5 hours.
We have set up this Just Giving page in order to help with initial costs of the challenge and to raise much needed funding for Histio UK. This relatively small organisation does a stellar job in supporting sufferers of LCH and their families. They also support medical staff by helping to provide a better understanding of this little known and terrible disease. Albie has been relatively lucky with how well his treatment is working so far, however not all sufferers are so lucky. More money means more research, more understanding and more support for all those affected and it would mean so much to us if we could be a part of making that happen. Please please please give as generously as possible as any help will make a massive difference to anyone who is diagnosed in the future.
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About the fundraiser
I'm Becky, Albie's Mum, also Mum to 3 month old twins Arlo and Charlie who were born 10 weeks premature just days before Albie's diagnosis. This has been a tough year for the whole family. I'm so proud that my friends and family can help us to support those who have helped Albie.