Energise Energy Solutions are fundraising in support of a close friend of the company, whose little daughter, Stevie, age 12, was sadly diagnosed with CLN3 Batten disease, in 2018.
CLN3, often called Juvenile Batten disease, is an extremely rare and terminal, neurodegenerative condition that causes profound disability in children, it is a devastating and life changing diagnosis. It is a fast-progressing condition and causes a progressive loss of skills. Children lose their sight, ability to walk, talk and swallow, as well as developing intractable epilepsy and childhood dementia. An early death is inevitable and occurs anywhere between late teens to early 20s, although some young people may live into their 30s.
Paul and his wife Karen made the decision to sell their family home and have purchased a bungalow, in an attempt to make Stevie’s life easier. It, however, needs to be totally renovated in order to suit Stevie’s needs.
We are keen to push ahead with our fund raising to ensure that adequate funds are raised to cover the costs and from the raised total a donation will go to the Batten Disease Family Association (BDFA) charity to help other families living with the same condition.
Our goal is to raise funds for level access flooring, accessible kitchen, a sensory room, and any adaptations to make Stevie’s home a safe family home.
To raise funds to support the family, the team at Energise Energy Solutions will be taking part in the Yorkshire Three Peaks Challenge on 16th July 2022
The Yorkshire Three Peaks route is 24 miles (38.6km), and includes 1585m (5200ft) of ascent.
The Yorkshire Three Peaks Challenge takes on the peaks of Pen-y-ghent, Whernside and Ingleborough, usually in this order, and normally takes around 12 hours to complete.
These peaks form part of the Pennine range and encircle the head of the valley of the River Ribble, in the Yorkshire Dales National Park.
The event and training will certainly push our team to their limits! We would therefore be so grateful if you could spare any extra money to donate to such an amazing cause and show your support to Paul, Karen and Stevie.