Celebrating Down’s syndrome & Sparkles charity

Life-changing charity Sparkles helps children with Down’s syndrome & urgently needs your donations to keep going. Mum Emily Reay tells us more…

“Down’s syndrome”… What do you think of when you hear these words? Probably some sort of stereotype. Sadly, people with Down’s syndrome (DS) face this all the time and assumptions can become reality, a self-fulfilling prophecy.

Since having Teddy – and knowing other families who have a child with DS – I’ve heard all sorts of negative things… “He may never talk.” “He may never walk, run, jump climb.” “He might not ride a bike, read or write, get a job.” Teddy can do all these things and more; he’s incredible! Yes some things take him a little longer, but he never stops trying and we’ll never stop helping him. However, if a child can’t do these yet, then that’s OK too. But let’s assume that they can, so that maybe they will.

The biggest challenge faced by families and people with DS is the barriers we face, because of expectations or the fact that equality doesn’t exist. Let’s take the UK abortion law. A baby with DS can be aborted up to the point of birth, 40 weeks. But for all other babies there is a 24-week limit. That’s inequality right there.

Lots of healthcare professionals ask “What do you want for your child?” and initially when I used to say, “I just want him to be happy” (which is another stereotype by the way, people with DS are not always happy; come over when he’s tired and hungry!) However, this is a cop-out answer. What I want for Teddy is exactly the same as what I want for his sisters. I want him to thrive and be the best he can be.

If you meet someone with DS, treat them as you would anyone else, because they are. They have a right to be included, fully and equally, respected and accepted. In our house we say “everyone’s different, and different is good”. When I tell people I have a child with DS I’m often greeted with a sad face or “I’m so sorry”. Don’t be! There’s nothing to be sorry about. He’s Teddy first, who’s cheeky, funny, loves school, football and the Rolling Stones. He also happens to have Down’s syndrome.

Teddy has received wonderful support from Sparkles. The team support pre-school children with DS with weekly speech and language therapy, OT and physio. This is an invaluable supplement to the NHS therapy which is not as frequent. The charity is entirely parent-led and relies solely on fundraising. With the cost-of-living crisis and Covid, the charity is struggling so Teddy and his friends have just completed a sponsored litter pick around the local village. Anything you can do will really help Sparkles.

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