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A THATCHAM woman has launched a campaign with local traders to wrap support around a little girl diagnosed with an ultra-rare condition.

Nicole Gallaugher is asking people to buy a bow for Addy Clarke a unicorn-loving, smiley, laughy girl with Battens Disease.

Addy, aged four, was diagnosed with the incredibly rare genetic disease that causes dementia, immobility, blindness and early death, a month ago.

There is currently no cure for the disease, which affects roughly 100 children in the world, but a procedure may preserve Addys sight, which Great Ormond Street say could be lost before she turns seven.

Addy is Mrs Gallaughers best friends daughter.

Her parents Hayley and Dave Clarke used to live in Thatcham and were church workers for Glendale Church, but now live in Swindon.

Addy now needs enzyme injections every two weeks for the rest of her life, which may only be another four to six years.

Great Ormond Street could offer the treatment to Addy, as well as the nine other families in the UK facing a Battens CLN2 diagnosis.

Mrs Gallaugher has started a campaign called Bows for Battens, trying to raise 80,000 for the treatment that could preserve Addys eyesight.

She said: Eyesight is particularly important because when Addy is not able to communicate in any other way with her parents any more, its still an important method of communication.

Its not just blindness, its blindness in conjunction with other losses.

Hayley has been my best friend since we were little kids. We have kind of done everything together.

Now we are taking a totally new journey.

Mrs Clarke said: The bows are such a powerful visual symbol of love for our little Addy.

It is a thrill to see cars with bows on knowing that as they go on their journey, they are journeying with us.

It means so very much.

Mrs Gallaugher has teamed up with Best Buds Florist in Thatcham Broadway to kickstart the campaign and is asking people to put a bow on their car bumper as a show of support.

She said: The bows are 5 each; a steep price for a bit of ribbon, a small price for a childs eyesight.

Sweet Imagination in the Kingsland Centre, SA Zim and The White Hart in Thatcham High Street and the Ugly Duckling in Newbury are also selling the ribbons.

One hundred have been made and 30 sold so far, raising more than 500.

Owner of Best Buds Amanda Smith said she felt compelled to help as soon as she heard Addys story.

She said: Being a mum and a nana, you just dontwant to think of any child suffering.

Every spare minute Im making bows.

You just have to try and do your best dont you?

Mrs Gallaugher urged people to back the campaign by either buying a bow from Best Buds Florist or messaging her on Facebook, offering to make bows, or, if shops were able to sell bows on their premises, get in touch.

All money raised will be paid into http://www.justgiving.com/fundraising/nicole-gallaugher

A separate account to support the family has raised more than 56,000 and donations can be made athttps://uk.gofundme.com/f/support-for-addy-and-her-family

Here is the original post:
Thatcham campaign launched for 4-year-old with ultra-rare Batten's Disease - Newbury Weekly News Group

This entry was posted on October 30, 2020 at 11:55 am and is filed under Blindness. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |