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Llantwit Woman Raising Money For Rare Genetic Condition By Playing Harp and Selling Marmalade

 

Sue Banks, a grandmother living in Llantwit Major, is raising money for a genetic disorder, GRIN1, by performing harp music and selling homemade marmalade and plants, this Saturday.

The condition is very rare, with only seven known cases in the UK, and Sue’s grandson, Evan is one of those living with it. GRIN1 is a neurodevelopmental disorder and is characterized by mild-to-profound developmental delay and intellectual disability in all affected individuals. Other common manifestations of the condition are epilepsy, muscular hypotonia, movement disorders, spasticity, feeding difficulties, and behavior problems. 

Sue spoke to Bro Radio about GRIN1 and Evan’s diagnosis when he was 4-years-old saying:

“Evan is now 10 years old and he was only diagnosed with it 6 years ago and that was due to genetic discoveries in Cambridge, really, when they did the Genome Project. GRIN is quite a devastating disorder – it has severe life-limiting consequences – the children are often epileptic, they’re non-verbal, unable to walk, they can’t feed themselves or do anything much for themselves, and probably worst of all, they have epileptic seizures of various types and have poor eyesight as well – they have something called cortical vision impairment, which means, if you look at something like a car, you can only see bits of that car, you can’t make sense of anything.”

Sue went on to detail the challenges Evan deals with and the kind of care he needs every day due to his condition saying:

“He doesn’t sleep very well so variably, you’ll go in and find him wide awake in his bed, which has special sides to keep him safe. He’ll need dressing, feeding, he’ll need his medications, he sometimes has extra fluids which goes via a tube into his tummy, called a peg.

“He is lucky because he can eat and feed and chew food himself, but some children have difficulty with this. He has to have oxygen sometimes because he goes very blue and when he does, he has little tubes that go into his nose and there is oxygen in the house to help him, but as you can imagine, he doesn’t understand the world around him, so it’s very difficult to keep oxygen with him, but they do their best as a family and he really needs total care from first thing in the morning until when he goes to bed at night.”

Saturday’s fundraising event isn’t the first time Sue has raised money for GRIN1, having previously run online campaigns among family and friends on social media, where, she told Bro, she was blown away by the response, but this year Sue thought she ought to try something a bit different.

In her interview with Bro Radio, which you can hear in full, this evening on Bro Radio’s Vale Drive, Sue explained what tomorrow’s and her previous harp events entail, saying:

“What I’ve been doing is, I’ve just been putting a board outside my house and people walking up and down High Meadow, as they go to the shops and things, are just stopping off because I’ve been sat there, in my front garden, just playing the harp, right on the curb really, by the pavement, and I’ve just been playing away and selling marmalade and plants to people as they come by.

“Last Saturday, I didn’t even put any advertising out, I decided to do it and I raised £61 and I was thrilled, and not only that, I met lots of lovely people. People are so generous in Llantwit, I’ve been amazed by all the help I’ve had from my friends and family giving me jam jars and helping me, so it’s been brilliant.”

You can find out more about the CureGRIN Foundation on their website, here.

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