21st March marks World Down’s Syndrome Awareness Day


Tom - world Down's syndrome day
Today is the 21st March. 21 – it's SUCH a magical number isn't it? It means perhaps The Big Birthday Celebrations, the real move into grown-upness! The key to the door? Or for me and so many others it is a very significant number for a completely different reason.

21 is the cheeky little (tiny in fact!) chromosome that completely turned our world upside down and backwards almost 12 years ago on 4th May 2001 when my first baby was born.

Tom had become the '1 in a 1000'

That is the number of babies born in the UK with Down's syndrome every day. So today is the 21st March and is Down's Syndrome Awareness Day, held on the 21st to recognise the babies, children and adults in our world, our society who have Trisomy 21 – Down's syndrome.

Many of you have shared my journey through my blogs, in particular the one I wrote as Tom approached his 8th birthday when I shared my thoughts and my fears in those early days. 

Many of you have supported me and my family and enjoyed hearing our adventures! There will however be some of you who don't know that I have a son with Down's and maybe some of you who don't really know what that means.

I guess that a day like today is about showing and sharing with the world that Tom (my son) and all children and adults with Down's syndrome are, aside from their differences , in many ways the same as you and me.

They have hopes, dreams, fears and aspirations just as we all do and it is our job as a society to recognise this and do all we can in order to help them to achieve all they can and should. As today is Down's Syndrome Awareness Day I thought it may be good to share a little.

What is Down's syndrome and how does it happen?

The most common form is called Trisomy 21 and accounts for pretty much 95% of all people who have Down's. If you recall your biology lessons you'll know that we are each made up of 46 chromosomes, 23 inherited from each parent. Except that, for Tom and many before him and many who will be born after him, there was an error in cell division called Nondisjunction resulting in three copies of the chromosome 21 becoming part of his chromosomal collection making him, well , 'Xtra' ordinary I like to say !

There is nothing missing quite the opposite in fact. There is an added Xtra something!! The trouble with the addition of that tiny additional chromosome is that it causes physical and developmental delays and varying degrees of learning disabilities from moderate to severe.

There are physical similarities shared by all those with Down's with features like the almond-shaped eyes, smaller noses, the crease on the palm, smaller hands and fingers and an overall smaller stature. Although they also have their family's features beautifully blending with their own making them distinctive yet individual.

Whilst older mothers have a higher chance of having a baby with Down' s syndrome, more babies are in fact born to younger mothers. I remember at our weekly gathering of babies born with varying 'Special Needs', I met an 18-year-old girl who was coping with motherhood at a young age, on her own and with all the extra emotions and fears that those early days bring – her daughter too has Down's syndrome.

People who have Down's syndrome are not 'suffering' from Down's syndrome, they don't suffer, they live, laugh and love just as we do and moreover without the prejudices we learn .

There are, however, medical issues that are more prevalent for them and many babies are also born with heart problems. Some problems (as we experienced with Tom ) require no intervention, though when Great Ormond Street finally released us from their care, I did ask if they were totally sure and couldn't we just come back next year just to be sure Tom's hole in his heart had truly closed.

Dan and I feel incredibly lucky that aside from all the constant and seemingly endless checks with Tom for his eyes, ears, thyroid etc, his life so far has been relatively free from health problems and we are so appreciative as sadly this is not the case for everyone.

In the press and on the television there are superb examples of children and adults with Down's syndrome achieving many tremendous things – marriages, modelling, acting, restaurant owning
and of course, the incredibly inspiring athletes who we all marvelled at during the Paralympic Games last year. Check out this incredible story of a young man called Tim Harris.

Tom and the next chapter 

I am so totally thrilled to see this brilliance shared and it gives me great hopes for Tom's future, yet I ask you to remember that every single person with Down's IS different and for some their achievements will be much smaller, however to them and their loved ones they are immense .

As a family we were truly lucky that Tom's achievements, (yes some tiny and some huge!) were totally embraced and enjoyed by his primary school. I will always be grateful for the inclusive attitude shown by all the staff and pupils. On the final day of school when the limo drove them around the village and the disco was cranked up to 100 decibels, Tom and his class friends were busy crying all over each other (not sure if Tom quite knew why, but he managed to squeeze out a tear or two just to fit in!!).

I too was crying as so many of the parents came and thanked Dan and I. They felt that knowing and growing up with Tom seeing and accepting his differences had enriched their children's lives and they would be better people in the future because of Tom.

After huge deliberations, many school visits , soul searching and seemingly endless tears (from me!) we decided that in September Tom would gain most from continuing his education within a mainstream secondary school environment .

However, I had been shocked and saddened by the lack of knowledge and indeed ignorance of some people I encountered at this time and was very concerned that this uneducated attitude was indeed still prevalent.

This has made me even more thrilled to be told by Tom's school that the Learning Support Team at his Secondary School, will today be wearing the same T-shirts that Tom is modelling oh so coolly!


What a fantastic statement? Plus, the children will also be sporting different coloured socks – still socks, but different! How wonderful that they are recognising the importance of this day by helping to raise awareness and educate their pupils.

After all, it is a day like today that paves the way for a better understanding of Down's syndrome and an acceptance of all the wonderful babies, children and adults who WITH their differences bring such joy and happiness to our world.

Thank you so very much for all your kindness and support that you have shown to Tom and to my family over the years and a huge thank you for taking a moment to read my words. Please do leave a comment if you would like, I love to hear from you.

Claire and Tom xxxx

P.S. Special thanks to my special friend Lindsey Brook (www.brookphotography.co.uk) for taking this gorgeous picture of Tom.

For more information visit www.downs-syndrome.org.uk


  1. trudi March 21, 2013 at 1:01 am -  Reply

    Claire, so beautifully,eloquantly,movingly written. I will share some of your past on knowledge at work today with my collegues. thankyou for reminding me feet should firmly remain on the floor! love to Tom on his special day!

  2. Maria Stanley-Harlow March 21, 2013 at 3:55 am -  Reply

    Hi Claire,
    I am a Mum of a special needs child myself, my son is Autistic and Non-Verbal who is also 12, so I understand your emotions totally with everything along your path with you son Tom.
    I work in a special needs school and we have pupils with Down Syndrome and they are all lovely and all have a brilliant sense of humour. One particular pupil never fails to put a smile on my face! :)
    It’s great that you are bringing awareness and hope people will think a little different. There is so much lack of undertanding from people in the world!
    The photo’s of Tom are great, he looks a happy young man, must take after his Mum! :) Xxx

  3. Anita Belding March 21, 2013 at 7:42 am -  Reply

    Hi Claire
    Soo pleased to read your blog , you are a very special lady, and have a beautiful son.I know it must be hard for you and other mum’s , but you are so positive, keep up the good work Claire and keep strong . lots of love and good wishes to you and your loved ones
    Love Anita x

  4. Gwen Tugwell March 21, 2013 at 7:51 am -  Reply

    I can only repeat what I have written to you before and that is you really are a remarkable girl, your blogs either reduce me to tears or make me laugh, either way I look forward with great anticipation to seeing each new one. The story of Tom is inspiring and I am sure that many families will benefit from reading about each new achievement.
    Lots of love to you, Dan and your lovely family and many thanks for sharing the wonderful experiences with us.

  5. Mrs Sandra Gifford March 21, 2013 at 7:54 am -  Reply

    I have read this at work with tears in my eyes, Claire, Tom is so lucky to have caring parents in his life.
    Working in a Academy school myself I can only imagine the pitfalls or chossing a new school. Wish Tom all the best for September.

  6. Maria Strange March 21, 2013 at 8:10 am -  Reply

    He’s lovely Claire. What stunning photos. You must be so proud. I’ve learned things I didnt know from your blog, so thank you for writing it. Ignorance and fear of the unknown can lead to prejudice, so if people understand the condition & spread the word to educate as many people as possible, the world will be a better place for all affected by downs syndrome. Keep up the good work. X

  7. Karen Whenman March 21, 2013 at 9:03 am -  Reply

    What a fantastic blog Claire! My sister in law also has Downs, she was 53 last week and we all went out for a celebratory dinner with her, how she loves being the centre of attention!! She is a real character, so loving and so non judgemental, very very special indeed. Reading your blogs I can tell Tom also adds that same sparkle to your lives. I wish you all extreme happiness and know Tom will achieve much, as he has a loving family to support his choices along the way.
    Very best wishes Karen

  8. Alison Greenway March 21, 2013 at 9:18 am -  Reply

    Claire & Tom what a wonderful picture! I am so glad you have experienced good support from school, and Tom looks so healthy and happy. I have a 20 year old son who is also called Tom who has autism. He was not diagnosed till he was 17. I am afraid his experience of school has left him with terrible anxiety and post traumatic stress! We are still trying to unravel what for all of us was a terrible experience. I totally appreciate small mile stones, that others might take for granted. I am so very proud of my wonderful son. Wishing you and your Tom lots of wonderful things to come. Alison xxx

  9. Maureen Miller March 21, 2013 at 9:59 am -  Reply

    Hi Claire,so pleased to read about your lovely son.I had a downs sister,who sadly died about 2 yrs ago,aged 60. she was such a happy sole,and loved people.Everyone made such a fuss of her,and miss her very much.There were upwards of 150 people at her memorial service,and although there were tears,everyone was happy to have known her.she was the youngest of 4,and we are really blessed to have had her with us.

  10. Patricia Simpson March 21, 2013 at 10:12 am -  Reply

    Hi as the mum a downs baby we were advised of a gloomy future ,now I often say I wish I could have seen a video of what his life and ours would be like ,I would have had no worries,he is the loveliest loving rascal in the world who is still the boss to his younger married brothers and who makes the world a wonderful place ,he is at present counting down to his 43rd birthday (it’s not till August) xx happy Downs awareness day.

  11. kay Rowe March 21, 2013 at 10:18 am -  Reply

    Hi Claire
    What a lovely photo you must be so proud. I had a downs syndrome aunty and you Could’t wish for a kinder gentler and loving person. Keep up the good work you are doing fab.
    Kay Rowe

  12. Julie Ann Roberts March 21, 2013 at 10:42 am -  Reply

    What a lovely blog Claire and a handsome young man too! I always look forward to reading your blogs and find you and your words truly inspiring! Much love and best wishes for your Birthday on 25th! x x

  13. Sarah P March 21, 2013 at 10:46 am -  Reply

    A beautiful blog. One of my closest friends has a 7 year old daughter who has that Xtra special something (she is a twin) and so I saw how scary it was for her and her husband as to the journey ahead. Charlie Mouse (not her proper name you understand!!!) is now 7 in mainstream school with a day at a “special” school for speech help etc. She is an absolute joy and deeply loved by all both home and at school (even the caretaker at the school who doesn’t appear to like children adores the mouse and makes everyone wait by the gates in the mornings until the mouse goes through!!! It is sad there is still so much ignorance around but I think it is getting better albeit slowly xxxx

  14. Angela March 21, 2013 at 11:11 am -  Reply

    Hi Claire
    Firstly I think you should have a warning above this blog saying
    “MAY CAUSE TEARS” that way I would have saved reading your beautifully worded piece later and not on a busy bus this morning – tear-stained and snotty faced – not a good look! :)
    I have a disabled child with a life shortening condition who recently turned two; these two years have been filled with love, laughter but also dark days with fear and tears.
    Your blogs about Tom keep me going and that there is happiness in the darkest days. Seeing you on screen with your wonderful, bubbly personality has made me look at the way I carry myself at work; I’m aware that my colleagues take their cues from me on how my days are going and now I give them a huge “Sutton” smile regardless of whats going on at home.
    What a handsome young man Tom is changing into – a real credit to Dan and yourself. Love the photos and the t-shirt.
    Best wishes
    Angela x

  15. fiona mitchell March 21, 2013 at 11:32 am -  Reply

    hi claire and tom.you are a insperation to us all.i have a grandson with autism who starts his big school in september .i know its not the same but thank you for giving us hope.

  16. Mrs T Reese March 21, 2013 at 12:20 pm -  Reply

    Hi Claire
    You are an amazing mum. I have very little knowledge of Downs Syndrome and I found your blog very informative and helpful in understanding why it occurs. Give your son a big hug from me and I wish you and all your family all the very best for the future.
    Trish Reese

  17. Jeremy S March 21, 2013 at 12:24 pm -  Reply

    Brilliantly put. Tom is Tom first and the fact he has Downs is only one of his characteristics; just as we all have our differences. Well done for helping raise awareness in a way that we can all relate to, and great to know that Tom is getting on so well at “big school”.

  18. h March 21, 2013 at 1:25 pm -  Reply

    Hia Claire, what a lovely blog! Could you reply to Trisha Ann from the end of your last blog for me, please read it and I’m sure you will understand my concern.
    Thanks Claire
    Helen xx

  19. Sylvia March 21, 2013 at 1:32 pm -  Reply

    Hi Claire
    As always what a lovely blog. Your Tom is so gorgeous and what a great t shirt! I truly believe that it is special people in the world that have been chosen to be the parents of children with special needs and I know Tom could not have done any better than you and Dan. You know you are my fav presenter , you are kind, compassionate and above all a very nice person. Your Tom can do no wrong if he follows your examples. Lots of Love Sylvia x

  20. sandra.chihuahua@sky.com March 21, 2013 at 1:49 pm -  Reply

    Hi Claire You have a beautiful son, I had a son with sever learning difficulties, we were told their was no reason for this that some were in the family some one was the same and it was inherited. he was born with a thick head of curly hair had the most amassing smile he was a very happy boy and man. He died in 2010 aged 39 years,found in bed on august bank holiday. The only thing wrong with his heath was the week before he died he had high blood presher, and was going back to the doctors for the results off blood test. The post Morton was miss adventure as no cause of death was found. This is the first time I have wrote or spoken to any one other than family, which is my eldest son and husband, your blog is very touching and I wish you and your family All the best of health and happiness. Your story brought a tear or three and my heart was truly touch. Allways remember to tell your children daily that you Love them. Best wishes Sandra.x

  21. maria March 21, 2013 at 4:09 pm -  Reply

    Hi Clare, in 1967 I gave birth to a lovely boy who had Downs well no one knew much about it and I cried for days and nights thinking I am at fault, but no nature plays a trick on us. He was the best child I had he nevery cried or misbehave it was too good. But then as he got into teens all hell broke loose but I cope there was no one to turn to, no help around but I coped and worked full time.
    Then in Jan.,1993 he got the flu which blocked all his tubes the doctors fought but he died 3hrs after valintine’s nite. Twenty years ago 4 weeks before my 50th birthday,
    Many years ago a woman said to me only special women get the chance tobe bless as mums as they are very special children,
    God Bless you and your family always, As I write this tears have falling as I still miss him. Bye Lots of love and a safe journey athrough life,

  22. kay salisbury March 21, 2013 at 4:31 pm -  Reply

    Well done Claire-another amazing piece of literature-always love your style,honesty,humour and most importantly—–bravery.I am sure Tom is as proud of his lovely family as they are of him. Well done to you all and thank you lovely Claire.X

  23. patricia ann pelham March 21, 2013 at 4:41 pm -  Reply

    How wondwrful each child is a blessing

  24. jenny wise March 21, 2013 at 4:51 pm -  Reply

    What a beautiful boy Tom is and how proud you must be of his achievements. My son is 43 now, and although not Downs, was severely brain damaged at 15 months, so I have lovely memories of his progress until that age. Sadly he is not able to communicate verbally but his eyes convey so much pleasure and pain. To me, he is beautiful, just like Tom and brings me and my other two grown up children such joy. I feel lucky that we as a family have been entrusted with such a special person. I wish you great happiness with every stage Tom reaches and enjoy each day with him
    with love
    Jenny x

  25. diane March 21, 2013 at 5:49 pm -  Reply

    As a mother of a complex needs child myself just wanted to thank you for your article lets all hope for more awareness for all our special children in the future well done Claire x

  26. Marian Bolton March 21, 2013 at 6:04 pm -  Reply

    Oh ‘Claire Bear’, I didn’t know you had a special little boy! My nephew Peter has Down’s though, now in his mid thirties, is not so little. He is the most happy and loveable gent you could wish to meet. He inspires and moves me every time I see him, always happy and smiling, and ever ready with a big hug. They truly are special children, so untouched by our worldly troubles and strifes. He adores Christmas (still!) and his favourite presents are calendars (yes, he likes to receive a few) so he can immediately start counting down to the next Christmas! I love him so much. God bless you all sweetie. xx

  27. maureen meredith March 21, 2013 at 7:12 pm -  Reply

    Love, hugs and xxxxx to all the family. Stay positive and strong.x

  28. Steven March 21, 2013 at 7:53 pm -  Reply

    Lovely blog again Claire. Thanks for explaining what Downs actually is. I was a little unsure myself and knew you had a child who had it – I nearly put suffers but just read that bit in your blog so Im NOT saying that!! Tom is lucky to have such a wonderful Mother and family roundabout him and he sounds like a really special young man. Good luck to Tom and the rest of your family in the future. I was born 3 months premature myself so can sort of sympathise. I won my many abttles when I was a baby and it seems Tom has too

  29. ali daniel March 21, 2013 at 8:11 pm -  Reply

    dear claire like 2 wish u ur family & especially tom all the very best 4 the future x

  30. mary March 21, 2013 at 9:55 pm -  Reply

    Hi Claire and Tom. Your blog was an absolute joy to read. Thank you. I work in a secondary school and work with kids who have autism ranging from mild to more severe in symptoms and, as with Tom, they too have hurdles and barriers to climb of varying degrees but, what is SO important and paramount in that child’s success and well being is the presence of understanding, dedicated parents who support, love, and nurture their child in addition to teaching them right from wrong. Tom is so lucky to have a wonderful family that gives him this valuable part of his life and supports him at home and at school. Unfortunately for some of the students I work with, this valuable piece of the jigsaw is missing and it is so so hard for them to learn the things that only a caring loving family can give and so hard for us to try and find the missing piece. But we do try, and whilst often, the journey is tough and at times feels like as staff we are slipping down a slope, we get there somehow at some point. I am sure Tom will continue to flourish and follow his dreams with the loving arms of his family around him. Much love Mary.

  31. R Ahmed March 21, 2013 at 10:15 pm -  Reply

    Hello Claire lovely blog, lovely son! I have my own sweet son who is the apple of my eye, perfect and healthy with a side of autism! Always great to see happy, positivr role models like yourself who are real and have real issues to promote. Keep up the good work!

  32. Sue sibsey March 21, 2013 at 10:41 pm -  Reply

    Hi Claire. Haven’t followed your blog before but was drawn in by the gorgeous photo of Tom on the homepage today. My own ‘champ’, Ben, has Downs and autism with severe learning difficulties, but will be completing his third and final year at a residential college this summer, where he has continued his academic education as well as learning some much needed life skills. He is very happy and thriving. I am so very proud of him, and indeed of myself for having the courage to let him go and learn to fly.
    Each stage in your child’s life brings a new challenge, and having a child with special needs is no different, except perhaps more stages that last longer, but it’s still just being a parent.
    Good luck and continued happiness to you and yours, Claire.
    Sue xx

  33. Joanna Downey March 22, 2013 at 11:23 am -  Reply

    Dear Claire, A beautifully written and moving insight from you, thank you again for sharing moments from Tom’s life. The photos are super and show a boy who looks to be changing and growing at an amazing rate – complete with his mum’s smile. I wore non-matched socks yesterday with 3 on my left foot!. Love from Jo x

  34. Jacqui Wallace March 22, 2013 at 4:28 pm -  Reply

    To dear Claire & Tom
    Sending tons and tons of love from Devon, absolutely love the picture Tom and Claire your article was so moving I am typing with my tears in my eyes. You guys are amazing and we love you lots.
    Jac, Ian, Kathryn & Dan xxxx

  35. Margaret Bennett March 22, 2013 at 7:25 pm -  Reply

    I have read your blogs with wonder and awe. As a mum, they have made me smile and shed a tear, Truly, Truly inspirational. PLEASE, PLEASE, WRITE A BOOK of your journey thus far, “THE LIFE OF AN ORDINARY MUM”. I’m sure it would be a best seller, and enrich many people’s lives. Thank you Clare and your wonderful son Tom for allowing us to be part of your lives. Praying Gods Blessings and peace on you and your family. Love. Margaret

  36. lindalo March 22, 2013 at 10:10 pm -  Reply

    Hi Claire,
    I have not written to you before,but read all the blogs. Such a lovely one to read and thanks to you I understand a little bit more. You must be so proud of your beautiful boy,as well as your other two children they say children are a gift from God and so you have been so lucky. Love to you and Tom and the rest of your lovely Family.
    Love Lyn.

  37. Kylie Gottsche March 23, 2013 at 9:31 am -  Reply

    With my experience of downs children they are the most caring and loving children they never want to let you go!! How lucky Tom is to have a beautiful loving family. Well done to put this information out. Happy downs day!!

  38. Michael March 25, 2013 at 1:03 pm -  Reply

    I don’t want to sound irrelevant on such a special subject and after such a well-written piece. I’m writing this on March 25 so Claire, I just wanted to wish you a HAPPY BIRTHDAY.

  39. Myfanwy Brown March 25, 2013 at 6:45 pm -  Reply

    Dearest Claire,
    I believe that ALL children are a gift from God, but some children need extra special parents. You and Dan are blessed to have Tom (as you know), and even though you have both joy, and heartache, I am sure the joys outweigh the heartache!
    Some of the trials in life may leave us questioning ‘why me?’, or ‘why my loved one?’. I don’t have the answers, but I do know that God knows, and in His infinite wisdom, He has allowed that illness, or special difference in Tom’s case. We will never understand the mind of God, but if we trust Him and do our best to have a thankful heart, He will bless us in ways we might not even think He can.
    I have struggled with all sorts of illness since I was three years old, and then I have had a very traumatic adult life too. But I can honestly say that I stopped asking questions many years ago, and I just put my trust in Jesus every day. And do you know what Claire..almost every day He gives me some kind of miracle, even if it is a tiny wee one.
    You continue to be in my prayers, along with Ali K and Julia Roberts. And when I say I pray for people, I really do! I know God hears my prayers for sick and hurting people, as I see many answers to those prayers. Prayer really is a very powerful thing, when you trust in the Lord and when you love Him. I see now that God has enabled me to feel and understand what people that suffer feel, through my own struggles. So I can pray for them. I am not meaning to be ‘preachy’, I just love the Lord so much, and I know He loves you and your dear family too. So keep believing and keep trusting.
    Love and God bless,

  40. Mrs V March 25, 2013 at 7:26 pm -  Reply

    I am crying as I write this. I am the mother of an autistic child, a boy , 8 years old. Sometimes I worry so much about what the future will hold for him and how he will cope in life. You write so beautifully about Tom. I just know you are a lovely lady both inside and out.You give me such positivity. Thank you ,Claire. All my love and prayers to you and your family.
    V xxx

  41. Denise March 25, 2013 at 7:32 pm -  Reply

    Hello Claire, I very much enjoyed reading this blog. I love the photo of Tom – he is a lovely looking young man and you and Dan must be so proud. I have experience of Downs in my family my mums cousin had it. He’s no longer with us but was such a character and loved by everyone who met him bless him. I do know however that life for those around can also be hard work but the positives outweigh the negatives.
    Well done Claire
    My very best wishes to you all
    Denise xx

  42. Marion Madden March 25, 2013 at 11:49 pm -  Reply

    Hi Claire. Tom is blessed with a truly wonderful family. I have a brother who is not Downs but was born with other health problems, the main one being most of his body is covered in mole like skin. My mother would never discuss it, in fact none of the family apart from my father ever mentioned it.My brother is in his sixties now and things were very different “back then”. My mother used to get so upset when people stared at my brother. My father used to say “..what are you crying for? Don’t cry for your son, cry for the people staring as it they who need pity, they are ignorant”. I was brought up not to distinguish between anybody because of my father’s attitude.It is not perfect now but it is better and more people have more understanding. Tom looks so happy, he is a credit to you.

  43. Susan March 26, 2013 at 5:44 pm -  Reply

    Hi Clarita,
    How are you? I wish I had read all the replies to you from everyone but no time yet..I will though. I know some will be from inspirational people like yourself. I work with special needs as I said before and I love it. I admire you greatly and I think Tom is so lucky to have you as a loving Mummy. Keep making us laugh Claire!
    Susan x

  44. Ann Harvey March 26, 2013 at 5:48 pm -  Reply

    Hi Claire, I have a son with Down Syndrome, my beautiful Daniel, he has just celebrated his 17th birthday. He is my world and I wouldn’t change him for anything, he is now in 6th form at school and is becoming such an independent young man. I love reading your blogs Claire they are so inspirational, Tom is so lucky to have a lovely mummy like you. God bless to you and your lovely family Claire.
    Love Ann & Daniel xxx

  45. Susan March 26, 2013 at 5:51 pm -  Reply

    Happy belated birthday for yesterday Claire! I just read the 2nd page of your replies and found that piece of vital info out! Hope you had a nice day? I also have to echo…please write a book about your experiences..you are so wonderful with words.
    Love Susan x

  46. Karen March 26, 2013 at 8:13 pm -  Reply

    What a lovely story of parents who refused to give up on their child as a mum of an older child (26) and another of 8 I can say that even in this day and age there is still some way to go with educating parents about special needs pupils in main stream schools
    I find this very worrying why parents still have problems accepting autistic etc children and you have guessed it the kids don’t see disabilities just the child !

  47. Christine Nicol March 26, 2013 at 9:32 pm -  Reply

    Hi Claire & Tom, your photo is lovely Tom you are such a handsome young man, you are going to have lots of girls after you, sorry Claire that is going to be another phase you have to look forward to, in a nice way :)) x
    i was brought up with a downs boy who was a neighbour, but he spent all his spare days in our house, he was so loving and caring, and very polite, back in those days babies with Downs were never expected to live after 21, but i think against all odds they all defied doctors and went on to be in thier 60+ years, i send Tom many best wishes for September, i am sure he is going to fine,take care love to you and Dan and the rest of your family, you are just so lovely, love chris xx

  48. Elaine March 28, 2013 at 8:23 pm -  Reply

    Hi Claire – I love reading your blog. I have 3 children with very different extra special needs. I am incredibly proud of all 3 and watch with admiration as they conquer even the slightest hurdle. Last week a very good friend of mine took her daughter to hospital for the impending birth of their first grandchild – hours later into the world popped a tiny baby boy with Down’s. They are all over the place just now mainly through not being prepared in their own heads. They are feeling anxious, confused, shocked and sad but most of all love for this incredibly delicious baby boy. I told them to read your blogs and they are now avid followers.

  49. Karen Pearson March 29, 2013 at 4:07 am -  Reply

    I Can’t express how wonderful it is to have finally found you. I have searched for you on everything I could think of. To see pictures of Tom, how he has grown and the wonderful news that you got your wish for him to go to a main stream school has made me cry. Tom changed my life completely. The three years I spent with Tom at the primary school will stay in my heart forever. I can’t believe how much he has grown up. He looks very happy. You are a wonderful Mother. I could never quite believe the fight you had inside you to get the best for him. My family talks about Tom often, especially Sophie and it is because of the love she had for Tom that she is now at University studying Special Education and also does community work with special needs children. This website has truly made my year. My long lost search and wondering are over :)
    Send Tom and the rest of your family all our love. Ask Tom if he remembers me :)
    I still shop at QVC even though we moved to America :)
    Much Love Always
    Karen xxx

  50. Judith Lennon March 30, 2013 at 6:02 pm -  Reply

    Hi Clare
    What a beautiful blog. It’s such a shame that people totally dismiss children with Downs, I’ve seen it for myself whilst being out and about – they just stare. I’ve come to understand more and more over the years about Downs as my duaghter works with special needs children of all ages and has shared many stories with me about them. All children are children and adults should be able to realise that they still need love and support as any child does whatever their needs and health problems. I admire your strength as a Mum to cope with every day life with Tom and the love and concern you have for him and the rest of your chiuldren.
    Love Judithx

  51. Sarah April 5, 2013 at 4:22 pm -  Reply

    Hi Claire – I wrote to you many years ago when you had just had Tom and amazingly you phoned me in response; this is the first time I’ve summoned the courage to comment on your blog but I’m so delighted to see how well Tom is doing and hope that school continues in such a positive vein. I have very good friends whose youngsters have done really well in mainstream, including gaining some GCSEs, so go with it. My daughter with Down’s Syndrome is now 17 and we have had a real rollercoaster of a journey – lots of health problems: epilepsy, strokes, immune-deficiency, scoliosis…… these episodes having impacted on her learning ability but she is the most positive young lady you could ever hope to meet, she knows exactly what she likes and what she doesn’t – unfortunately chocolate cake being one of her “loves” hahaha, doesn’t go well with her now “typical” Down’s Syndrome figure – but you know what, none of us cares as the fact that she is still with us is such a miracle! Love your reading about you all xx

  52. michelle April 5, 2013 at 11:26 pm -  Reply

    hi claire ur son is a very handsome young man i love the pics im kind of the same sitsuation as you as ive a son with jacobsen syndrome its very rare so not many people know about it and there is no charity that i have come across so far to help raise awerness like you have for downs i am to worried about matthews education as he leaves school as i dont no what directions he will encounter as the years go by and his syndrome is 1 where very few people with this type of syndrome have been reported and only a handful of them have lived into adulthood so i dont no what type of future holds for my son but i will help and ehjoy his life to the fullest and take each day as it comes its very upsetting to know there are very harsh people out there ive ad to deal with a few over the past 6 years,but in good spirits he loves watching qvc as do i its the best shopping channel we tune in everyday,anyway hope u have time to reply sorry its an awfully long post many thanks michelle xxx

  53. Myfanwy Brown April 13, 2013 at 12:13 pm -  Reply

    Hi Claire,
    I see you did not post my comment. I am sorry if I offended you in any way. I always speak from my heart and I only meant well.

  54. Helen April 13, 2013 at 2:26 pm -  Reply

    Hi Claire
    I recently lost my beautiful sister aged 51yrs. She was mentally handicapped and sadly born at a time were the attitude was lock them away. My mother was told she would never talk, walk, feed herself,dress herself or even know her family. Well I sure would like to meet that Dr who said that to my mother.
    She talked, yes mainly to us her family. She fed herself, slowly but she did it. She even dressed herself again slowly but she knew sock went on her foot again according to the Dr she would never do this. She gave us so much over the years and to hear her say ” I love you” and hold her arms open for a hug meant the world to us and proves you should never under estimate these special humane beings and given the love and support
    Of their families they have much to offer in this world.
    I just wanted to share the happiness my Sister gave to us her family and she is greatly missed. So Claire you and your family have a Special place in my heart.
    Helen xx

  55. Sandra haley April 17, 2013 at 4:46 pm -  Reply

    Hi clair i would like to say a big thank you for your blog i follow it avidly , my little grandson Thomas has downs ,he is truly amazing at 8 months he giggles all the time he has a shock of ginger hair and the bluest eyes you ever saw and i am so proud of him .reading your blog gives me such insperation and my daughter and son in law love to follow how well your tom is doing , you must be as proud as punch of the fella .i no that our thomas will be growing up in a loving large family , thomas is at present an only child but has 4 cousins who all love him to pieces .i no there will be hurdles to cross but everytime i look at this darling little boy i get a pure feeling of hope and love what more is needed .thank you so much clair your a fine lady .

  56. Vivien May 2, 2013 at 2:22 pm -  Reply

    I’m a bit late finding this blog, Claire, but your lovely post reminded me of the daughter of a family friend who found there was little in the way of specialist education for children with Down’s syndrome. She then started a charity in our area where she and others teach children and also support parents of children with Down’s syndrome and you can read about her inspirational story here. http://www.thenorthernecho.co.uk/features/leader/10164565.Fighting_for_a_birthright/

  57. christine fryer May 12, 2013 at 1:39 pm -  Reply

    Hi claire just read your wonderfull story. What a very luck boy to have such cari g patents. You had me in tears good luck to you all for the future lots of love chrissie xx

  58. Sandra January 29, 2014 at 11:08 pm -  Reply

    Hi Claire I am so pleased to hear how well Tom is getting on its hard to beleive Tom is now 12. I am not sure that you will remember me but I ran you a bath and wheeled to special care to see tom. I often wondered how you all were. My husbands sister was downs syndrome,sadly she is no longer with us. Shewas well loved by us all. Continue your good work with raising awareness and many wishes for Toms future.
    Sandra xx

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