Celebrating, Educating and Supporting Down's Syndrome in Northamptonshire

Helping children to flourish and achieve their full potential in life.

Celebrating

Celebrating our children’s lives through their achievements.

Educating

Educating parents, teachers, medical professionals and the wider community about Down’s Syndrome, busting myths, changing perceptions, promoting inclusion and raising awareness.

Supporting

Supporting our children and their families. Helping them to flourish and reach their potential.

Donations

Your donations help us continue to provide fantastic services that benefit our children and families.

Your generous donations help us to continue providing fantastic services to our UpsnDowns members!
Please make a donation today!

Olivia is the fourth child of mine, born in Bath Somerset in 2012. She is six years old and has two older sisters and one older brother. 

We knew before Olivia was born that she had Down’s syndrome, Dandy walker tendency, AVSD and a hole in her heart. She was born by emergency c-section at Royal University Hospital in Bath after many appointments and scans in Bristol at St. Michael's Hospital. 

At the time Olivia was born we lived in Frome and we didn't have many interactions with other families. We just focused on Olivia and her medical needs. As you can imagine, that took up a lot of our time. Her first year was mainly spent attending hospital appointments.

Consultants planned her heart surgery before the age of five, but at the age of eighteen months and after so many illnesses, this was brought forward.

Olivia is so strong and has taught us the true meaning of love, affection and acceptance. I just couldn't imagine our world being without Olivia, she fought through her surgery and with support from a local Somerset charity we began to be more involved with other families. Hearing their stories, we didn't feel as isolated. 

Olivia was diagnosed with Hirschsprung’s disease and a narrowing airway. She had two further operations, the first being open bowel surgery, the second being the removal of her tonsils and adenoids. She will have further heart surgery for a new valve as she grows.

With everything she's been through, she just carries on, she is very independent but stubborn at the same time. Olivia has such a wonderful character, and everyone adores her. She loves to dance and sing, and her favourite characters are Moana and Mr Tumble. She has a great party move - the wiggle!

She started nursery in Frome and fitted in so well with all the other children and benefited from portage once a week and became great friends with her portage worker Vanessa. 

In 2016 we moved to Corby, Northamptonshire to be closer to family due to personal issues.

Olivia settled very well into school at the Exeter nursery and had a great Reception year at Beanfield Primary, she has learned so much and we have learned so much from her. We have met some wonderful people In Northamptonshire and this has really helped Olivia to become more sociable and overcome fears.

UpsnDowns reached out to me through other members that live in Corby. Through UpsnDowns, Olivia attends speech and language therapy sessions and she loves the Wacky Warehouse sessions.

The charity provides us with the opportunity to meet other families locally. We have signed up for swimming lessons and attended the wonderful summer fete. We all had an amazing day and look forward to the Christmas party as we have never been before.

Olivia is on the waiting list to see the Occupational Therapist through the charity too.  Everyone has been lovely, and I know where they are if I need them. 

Olivia has been through so much in her short six years and we admire her strong-willed personality. She's my inspiration and keeps me going. During my cancer treatment, she made me smile every day and got me through it.

She is the centre of our world and loved beyond words by all her family and friends. Thank you UpsnDowns for all you do for Olivia and our community.

Our Stories

My wife Leanne and I found out at our 12-week scan that there was a problem with our baby, the nuchal translucency measurement which measures the fluid space at the back of the neck...

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Elsie

Olivia is the fourth child of mine, born in Bath Somerset in 2012. She is six years old and has two older sisters and one older brother.  We knew before Olivia was born that she had Down’s syndrome...

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Olivia

This is the story of Rory’s journey so far through primary school – the challenges he has faced, his hard work and subsequent achievements which we have all celebrated along the way...

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Rory

Hi, my name is Tayla, I am 9 years old.  I had a bit of a tricky start. When I was in my mum's tummy, the doctors said I had a heart condition called Complete AVSD - holes in my heart...

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Tayla

Kim and I had Izzy in August 2010, a perfectly normal, if a tad chaotic, home birth in Woodford, Northants. An hour later, Izzy started deteriorating and we sped off to Kettering General Hospital.

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Isabella

We were so excited to be having our first child together and Jacob arrived on 15th December 2010 -  2 and half weeks early!  Jacob was the cutest little thing and we were proud parents...

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Jacob

Nicole’s pregnancy with Oliver was normal; we had all of the tests apart form the nuchal translucency screen as the hospital took forever to get us a scan and we missed out by a couple of days...

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Oliver

Like every hot-blooded Italian worth his salt I burst into this world following a spicy bowl of spaghetti (enjoyed by my mother) and a high speed car chase involving the police to the hospital...

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Luca

We were told that our baby had Talipes of the right foot and all I could think about was how it would affect my childs growth and the possible ridiculing that my baby would receive whilst growing up...

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Evan

We worried our way through the pregnancy and had more scans than anyone else we knew – including a 3D one in which we saw our perfect looking baby boy...

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Freddie

Dylan has Down’s syndrome, although we prefer to use the term “Up” syndrome as there has been no point since Dylan’s arrival that we have felt  “down”...

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Dylan
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