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Walking For Stevie
Updated: Jun 14, 2022
We’re sharing this post to echo the folks over at Energise Energy Solutions who are fundraising in support of a close friend of theirs and our company, whose little daughter, Stevie, age 12, was very sadly diagnosed with CLN3 Batten disease, in 2018.
About CLN3
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.
Brave decision
Paul and his wife Karen made the brave 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.
Raising funds
We are proud to support Energise by promoting this cause with a hope 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.
The main goal being to raise funds for level access flooring, accessible kitchen, a sensory room, and any adaptations to make Stevie’s home a safe family home.
The Challenge #WalkingForStevie
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 required to be ready for the event will be incredibly challenging for them! 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.
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