It is no secret that our MD Kurt Hedgley is a keen supporter and participant in charitable events both personally and professionally. It would now seem that this ‘bug’ has rubbed off on to his family as well! Read on to find out what the Hedgley family have been preparing for and will be taking part in this weekend…
The Charity Event
Dawn Hedgley and her daughter Lauren will be taking part in a half marathon walk in London on 23rd September 2017. The aim is to raise awareness and money for a charity very close to their hearts – the BDFA (Batten Disease Family Association). The walk will take them past some famous landmarks and lesser known corners of the historic capital and will take a good 4 hours or so to complete.
The Batten Disease Family Association is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten disease.
Batten disease is extremely rare and begins in childhood, usually appearing around ages 2-10, with the gradual onset of vision problems or seizures. Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight, speech and motor skills.
Currently there is no cure for any form of the disease and therefore specialist symptom management and therapy is essential to assist in maintaining a good quality of life for children and their families. Holistic support for parents, siblings and wider family members is extremely important throughout their journey.
Although there are limited funds available, research into possible methods for slowing the progression of the disease and potentially curative treatments are on-going.
Dawn’s daughter Abbey has Juvenile Batten Disease.
Abbey was diagnosed at the age of 8 years old, at diagnosis the devastated family were told she may not live beyond 18 years old. She turned 23 this summer. Although she has many health and mobility issues, Abbey still has an active social life and loves nothing more than a coffee and cake date.
The Hedgley family try to provide the best life they can for Abbey but they admit that some days are tough. The disease is rare and there are very few professionals who have any knowledge or experience of the condition and so having the support of the BDFA has been a lifeline for them. The BDFA have helped them to make contact with consultants that have the experience, knowledge and scientific interest in managing her medication and other symptoms of the disease. Knowing that they are only a phone call away has been a great source of comfort.
The Hedgley’s want to complete this half marathon to give back what they can so the BDFA can help other families living with this disease. Dawn added:
“The BDFA are a great source of support and information, they are a self funding charity who are at the forefront when it comes to research and therapies for Batten Disease. We are extremely grateful for their support and want to help raise funds so that they can continue to help other families such as ours.
Unfortunately a cure will come too late for Abbey but as part of the tight knit Battens family we all strive to help in the hope of saving our precious children.“
How You Can Help
If you would like to support Dawn and her family in their quest to give something back to the BDFA then you can do this by visiting their Just Giving Page by clicking here.
Any donation, large or small, will make a difference so please help raise money and awareness for this very worthy cause.