World Duchenne Awareness Day

by | Sep 7, 2023 | Hero's Updates

Hero’s Updates

Hero’s fight against DMD

It’s World Duchenne Awareness Day,

so I would like you to meet Hero. Our 3-year-old little boy with DMD.

He was diagnosed with Duchenne Muscular Dystrophy before he was two thanks to a standard blood test that showed unusual results when was hospitalised due to flu.

I have started this blog today to help raise awareness of Duchenne Muscular Dystrophy.

 

Hero is fun-loving, cheeky, and loves the world! He also walks and runs with a waddle, tires easily, falls frequently, and has a speech delay.

A pandemic for the brave

Hero and his twin Apollo were born shortly before the lockdowns of 2020. We were isolated at home and barely saw anyone – let alone health professionals! We were supported to breastfeed via Zoom and our first trip out of the house was at 9-weeks-old, to go for their hearing test.

Hero and Apollo arrived when Thor and Artemis, their older siblings were just 5 and 3-years-old.

 

I can guess what you are thinking about their names. We decided to give the children “press names” when we decided to set up Hero’s family fund, to protect their digital futures.

Live in the Now

For now, life isn’t much different from what we anticipated with 4 children. OK, we do have a few extra hospital appointments and a whole load of futureproofing to do.

It is important for us to ‘live in the now’ and enjoy today. But, plan for the future – instead of worrying about it! We know we have to adapt our house to accommodate an electric wheelchair, hoists, and, accessibility equipment – such as sinks! And that isn’t going to be covered in full by the DFG grant of £30K!

How can you help?

We decided to raise money for research into DMD and to help support the changes we will need to make for Hero’s future.

So far we’ve raised money through bake sales, tombola, and an ice bath challenge, raising £1086.

Our family and friends are supporting us this week by taking part in The Great North Run.

Thanks to Adam, Nicola, Lucy, Rob, Charlotte, Elizabeth, Laura, Sippy, Dean, and Rachel – that fund is set to increase!

We wish them good luck on their runs, but we need your support too!

Can you help us fundraise?

Do you have some ideas of how we can increase Hero’s chances at a fulfilled life without the struggles of inequality?

World Duchenne Awareness Day’s theme this year is “Breaking Barriers”.

Please step up and help us prevent Hero’s barriers from existing at all!

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