Bethany

“My daughter didn’t believe she was beautiful – until she heard the words come from Tom…”

Bekki Maddox, 46, couldn’t convince her daughter she was beautiful. But after appearing on Channel 4’s The Undateables, Bethany finally found the love she longed for….
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George

Hi I am Tatty. I am Greek but have always lived in England. When I was pregnant with my son George I was 39. I already had a little girl – Izzy, who was 3 years old and this pregnancy was our much wanted second child. We had taken over a year to conceive so we decided not to undergo any invasive tests so as not to risk our baby’s safety. The chance we were given for having a child with Down’s syndrome was 1:1,000. Read More…

Anghard aka ACE aka The Girl


Our lovely daughter was born weighing 3 lbs 9 oz, five weeks prematurely with Down Syndrome (DS) in March 2006, had open-heart surgery to close three holes in her heart aged 16 weeks. She recovered fully from this and entered mainstream primary schooling supported by access to a Specialist Resource Base (SRB) within the school. In the autumn of 2017, aged 11, she became the first pupil with DS to attend her High School, where she is in the mainstream population supported by one-to-one assistants. We are now eight weeks into the term, both school and Ace feel that she is settling-in nicely and she has just been voted Form Captain. Each week she also attends classes or lessons in athletics, ballet, Guides, swimming, trampolining, and judo. She also enjoys riding and climbing. Read More…

Megan

Hi I am Megan Wilcox and I have Down Syndrome but that doesn’t stop me being amazing.

I started riding when I was just two years old at Follifoot Park Riding centre in Harrogate. I started riding because my Mummy used to ride and she was really good. I ride now nearly every day with the Burrell Dressage Team at Pannal, where my pony Dunks lives. Read More…

Heidi

Hiya, my name is Heidi and I am 22 and I live independently in a flat, I have been living there for a year now and I am loving it. I do my own cooking and cleaning with only a little bit of support and encouragement from my amazing future guides, I may have down’s syndrome but that has never stopped me from leading a fulfilled and crazy life.

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Daniya

What do you write when trying to tell the world about your life with a child who has Down Syndrome? So, I tried to remember what it was like when I opened the door to the midwife who came to break the news that I am ‘high risk’ of having a child with Down Syndrome. Those memories are hazy and painful. I do remember a very supportive, clear thinking husband and amazing midwife and consultant obstetrician. When people talk about medical professionals and their handling of expectant and new parents I cringe, because I myself am a doctor. However, my own experience was a supportive midwife who never ever once raised any question about my pregnancy. A consultant Obstetrician who sat us both down, explained the ‘stats of chance’ and when we said we would like to continue the pregnancy and because of the risk of miscarriage did not want further tests, was totally supportive. That was the start and end of any discussion! I wish all expectant parents would have the same experience. I wonder whether we were ‘spared’ as we are both doctors. This remains a mystery….

From those early memories, also floated up a memory of frantically googling ‘Down Syndrome’ and coming across the description of ‘most children keep their mouths open and their tongues hang out’. This coupled with about 30 minutes of teaching at medical school about typical features of Down Syndrome was the sum of my knowledge. This meant my pregnancy was spent agonizing over ‘How will I cope if my baby does have Down Syndrome?’

Once Daniya was born, it was love at first sight! I knew straight away she had Down Syndrome and that just made it bitter sweet, maybe because I could not plan a future for her as we do, knowing full well we have no control over it! However most difficult part was not knowing what to expect? As fate would have it, I did not get much time to fret over these thoughts in that hormone driven, emotionally over charged state of mind. Daniya was unwell and was taken to SCBU (special care baby unit) and then needed surgery at just 10 days old. That hurt so much that it is difficult to put into words.

Once we got her back, we have never looked back. Almost instinctively I knew what to do. From baby massage to baby signing, messy play to portage, physio to speech therapists we have worked hard at making sure that she reaches her potential. We have worked hard but she has worked harder and along the way my lovely, cheeky and determined daughter has taught me a few things about enjoying life, hard work and never giving up! Our life as a family is certainly different but not dull by any means.

 

Now 11 she is a constant chatter box and the centre of our home-life. She has been in a mainstream setting from the beginning. She had a great time at primary school and ended her last day at primary by getting a special mention and shield at the leavers’ assembly for her hard work, determination and love of learning. A very proud mummy moment which I never envisioned when I held her for the first time. So, this September we have cautiously started mainstream secondary. It is early days and I dare not relax yet!

 

I have no doubt she has made all of us better people. I have met the people I never knew existed and been introduced to a more ‘empathic’ world. Doctors are strange beings and part of our training is ‘fixing humans’. Hence everyone knows doctors make bad patients. In a similar context, I think I really struggled with not being able to ‘fix’ the Down Syndrome. This painful insight helped me move forward and I hope has helped me become a more caring human being and a health care professional who understands what it is to be on the ‘other side’.

Her younger brother has maturity and understanding which I have seen in kids who have siblings with additional needs. He understood from a young age that having a ‘special sister’ made him a ‘special brother’. This July I listened proudly when it was announced that he has been chosen head boy of his primary school, to be role model for younger pupils and teachers routinely praise his considerate nature.

I must mention my husband who has been my rock, silently standing behind me, always there. He has always believed in Daniya and she adores him. From insisting she learns cycling to ensuring she understands that her school work is as important as her brother’s. Sitting with her to make her do spellings and listening to her reading, and then convincing our nearby Islamic education academy to take her on, he has been there.

To come to the star in our family, well she has a busy schedule. She goes to mainstream swimming lessons, is learning to ride a bike and a horse! She plays at DS football weekly and is part of inclusive cricket team at a nearby club. She also goes to Sunday school for one hour of Islamic studies where she is teacher’s favourite because of her enthusiasm. Then of course dance, drama and variety of activities at our local DS group. She loves to dress up, eat out and wants desperately her very own ‘mobile phone’. She loves Disney movies, playing on computer, a bit of reading and going on holidays. She managed a 4-day residential trip this year with her class and I was left wondering what to do with myself!

The journey is different but it is as fulfilling if not more. It is not easy sailing but good days are more than not so good ones. You are part of a special club. I would say to expectant and new parents ‘Welcome to the family’ ?

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Tom

In 2001 our beautiful baby daughter Emily was born. Having suffered several miscarriages and fearing I may never be able to have a baby I was ecstatic. After a couple of years, I really wanted another child, my husband John was reluctant but I won over and became pregnant! I was 39 and decided to pay privately for a nuchal test as knew my ‘risk’ of having a baby with a disability was increased, so was very relieved when they advised the ‘risk’ was reasonably low.

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Oliver

The thing is, at the beginning, all you can imagine is unhappiness and dissatisfaction, such sadness as all your dreams and imaginings for your child are shattered. I compare it to a beautiful stained glass window, created by your conscious and subconscious thoughts and visions of your child during your 9 months of pregnancy, all those things he or she will do, all those things he or she will be… and then someone comes along and takes a huge placard that says DOWN SYNDROME and smashes it into your magnificent stained glass window…. And all you see are the shattered pieces all over the floor with this huge ugly sign clearly and blatantly spelling out in capital letters, something you really really don’t want to see. But the reason you don’t want to see it, is that you are frightened by it, and the reason you are frightened by it, is that you don’t know anything about it. It is quite simply fear of the unknown – and hey – EVERYONE has that!!

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Alex

Alex is our much-loved second boy of three. Three boys are trouble whichever way you look at it, but they all bring us happiness in their different ways.

When I was pregnant with Alex I went for the routine triple test, given as routine and without any counseling, and because of a series of admin hurdles we only got the result when I was 16 weeks pregnant and baby was making his presence well and truly felt being very active. The result was 1 in 100 for Down Syndrome. We discussed the implications of an invasive test and decided that our baby was much wanted and we didn’t want to risk a miscarriage. We would be fine if our baby had Down Syndrome.

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Emily

In some circles, the 12th of August is known as The Glorious Twelfth. I can’t argue with that – it was the day that Emily was born back in 1992. Emily – beautiful, intelligent, crazy, gutsy, adventurous Emily. Words can’t define her. To understand Emily you have to be in her presence, you have to dance with her, sing with her, laugh and cry with her. That might just give you a glimpse of her character; of who she is. For who she is, is far more important than any medical descriptions that try to label and define her as simply having Down’s syndrome. Every day with Emily is an opportunity to learn something about how to live and what it means to be human.

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