Born to Be Different

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Friday 24 April 2009

Read on for details of organisations providing support for parents and families expecting or already caring for a child with a disability or serious health condition.

When a child, or expected baby, is diagnosed with a disability parents can experience feelings of disbelief, anger, despair and isolation.  The following organisations help by providing practical and emotional support and in-depth information to anyone who cares for a child with a disability or special need:

Whatever medical condition your child has, Contact a Family can provide support, advice and information and can also put families in touch with each other. Go to their website,www.cafamily.org.uk, contact their helpline 0808 808 3555 or Textphone for people with hearing difficulties on 0808 808 3556 (both free, Mondays - Fridays 10am-4pm, Monday evenings 5.30 – 7.30pm). The Contact a Family website features a directory of specific conditions and rare disorders.

There’s also a website at www.makingcontact.org enabling secure linking between parents of disabled children in the UK and internationally.

Newlife Foundation (www.newlifefoundation.co.uk) offers comfort, support and information to anyone concerned about or affected by child disability. Their confidential Nurse Helpline is managed by a team of nurses who have extensive experience of a wide range of birth defects. Contact them on 0800 902 0095 (free, Monday - Friday 9.30am-5pm) or check out their website.

Antenatal Results and Choices or ARC (www.arc-uk.org) provide non-directive support and information to parents throughout the antenatal testing process and when an abnormality is diagnosed in their unborn baby. They offer continued support to parents whatever decision is made. Call their helpline on 0207 631 0285 (Monday - Friday 10am-5pm). You can also email to info@arc-uk.org or go to their website.

If you’re making decisions on the most suitable education for your child, ACE, The Advisory Centre for Education (www.ace-ed.org.uk) is an independent advice service for parents in England and Wales. They offer advice on many topics including special educational needs, admissions, exclusion from school, bullying and more. For advice call the free helpline 0808 800 5793 (free, Monday & Tuesday 9am – 5pm, Wednesday - Friday 10am - 5pm).  You can also text for advice to ASKACE at 68808 and there’s a lot of information and downloadable packs on their website.

The Channel 4 series Born to be Different features children with specific disabilities - and the following organisations and support groups can provide advice and help: 

The Down's Syndrome Association (www.downs-syndrome.org.uk) provide information and support for people with Down’s syndrome, their families and carers, as well as being a resource for interested professionals. They can be contacted on 0845 230 0372 (Monday – Friday 10am-4pm). Go to their website for more information on services available including advice on education rights.

The Arthrogryposis Group - TAG (www.tagonline.org.uk ) is a support group for people, or families with children who have the condition Arthrogryposis Multiplex Congenita. TAG offers contact, support and regional information at their website or call 01299 825 781(Monday-Thursday 9.30-2.30pm).  

If your child has a rare chromosome disorder you may find it helpful to get in touch with Unique - The Rare Chromosome Disorder Support Group (www.rarechromo.org). Unique is a source of information and mutual support for families of children with any rare chromosome disorders, as well as for the professionals who work with them. Contact Unique on 01883 330766 (Monday -Friday 9am - 6pm answer phone at other times). Or email to info@rarechromo.org or visit their website where you can download leaflets on individual chromosome disorders including Trisomy 9p.

The Tuberous Sclerosis Association – TSA (www.tuberous-sclerosis.org) offer lifeline support for those affected by TSC, their families and carers. Visit their website to send a message or query by contact form.

The Restricted Growth Association (www.restrictedgrowth.co.uk) provide information and support to help families when a child with achondroplasia or restricted growth is diagnosed.  They can be contacted on 01733 759458 (Monday - Friday 9am-5pm, closing at 1pm on Wednesday, Tuesday evening 6pm – 9pm) or by email to office@restrictedgrowth.co.uk.

The Association for Spina Bifida and Hydrocephalus - ASBAH (www.asbah.org) offer advice and information to individuals and their families. They have advisors in England, Wales and Northern Ireland and you can contact them on local rate 0845 450 7755 (Monday to Friday 10am-4pm) or visit their website. 

The Scottish Spina Bifida Association (www.ssba.org.uk) has Scotland-wide 'Family Support Services' which offer a local rate helpline 08459 11 11 12 (Mon-Fri 9.30am-4pm) and also will arrange home and hospital visits throughout Scotland where necessary. During the programmes transmission and until 11.00pm the helpline will remain open for calls, or you can email familysupport@ssba.org.uk.

The National Autistic Society – NAS (www.nas.org.uk ) for information, advice and support for people with autism and their families. Call the helpline 0845 070 4004 (local rate call, Monday – Friday 10am – 4pm).

The mother of one of the children has been diagnosed with Multiple Sclerosis. To find out more about MS or to get advice or information for yourself call the MS Society (www.mssociety.org.uk) helpline 0808 800 8000 (free, Monday – Friday 9am -9pm) or The MS Trust (www.mstrust.org.uk) on 01462 476 700 (Monday – Friday 8.30 -5.30).

For information on epilepsy and the support available, contact Epilepsy Action (www.epilepsy.org.uk ) on 0808 800 5050 (free, Monday - Friday 9am -4pm). The National Society for Epilepsy - NSE ( www.epilepsynse.org.uk )  01496 601 400 (Monday - Friday 10am -4pm).

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  1. I have been watching the programme since it first started, and can relate to everything that Emily and her family have/are going through as I have a 9 year old daughter who has Spina Bifida/ Hydrocephalus.
    Posted by Helen Mulligan on 10/06/2009 23:17:04
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  2. I have watched the programe from the beginning,and every year i have cried or laughed,theses familys deserve the very best in life for allowing the cameras to follow them for so long in hard and difficult times as well as happy times.My son michael has Achondraplasia and will soon be 12,watching hamish and the things he is going through really hit home,people looking at you all the time,asking your age etc,it is very hard for my son.I would love to be able to get in touch with hamish or his family just to show support etc.Please keep up the good work.
    Posted by gill on 15/05/2009 14:07:11
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  3. I am a single mother with a 9 year old son who has Downs Syndrome. I would not change my life at all. Watching this program makes me realise just how lucky we are. My son adds value to our every day. We have highs and lows just like any other family. These children and their families are an inspiration. I wish them all the luck and love for the future. X
    Posted by Sally on 15/05/2009 10:33:30
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  4. Having two beautiful boys already, we lost our first daughter 7 years ago today.... No surprise therefore to know that I cried throughout todays programme - especially seeing Selby in PICU - life is so unfair. We lost Aimee when she was 11 hours old from a major congenital heart defect. We chose to go on and had our second daughter Millie who has Down Syndrome. We knew at 11 weeks gestation, choosing to give her a chance as nature / God had designed and have been blessed daily with her - she is our joy and she is here - after healing naturally from a hole in her heart by her first birthday. We look to the future because there is nothing if we look backwards but there is the potential for a full and happy future if we make that choice if we search for the positive and create hope. God bless Aimee, always with us where ever we are.Love you and miss you always sweetheart.....Mummy XXXXX
    Posted by Alison on 13/05/2009 23:34:05
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  5. We started watching this series a few years ago, and it is so lovely to catch up with how the children and families are doing. They have such enthusiasm for life and i know it can be hard (we have a 3 year old daughter with Down Syndrome) but i hope we can have the same strength over the years as these families have. Thank you to all involved for agreeing to take part in the series as it is such an inspiration to others.
    Posted by Lorraine Soles on 12/05/2009 16:22:47
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  6. We are new to this series of programmes but are indebted to the courageous and inspirational children and families featured on the show. Our baby daughter, now 5 months, was diagnosed with arthrogryposis at 9 weeks and at the time it turned our lives upside down. We are still coming to grips with what it means in the long term and undergoing various test to rule out other associated issues but having seen these fantastic, sparky and brave children, not to mention their dedicated, loving parents, we are very moved by their determination to get on with life to the very best of their ability and to make the most of every single moment. It has also been very helpful to say to our friends and family "watch this" when we can't answer the numerous questions they have about what the future holds. We look forward to future episodes. Our best wishes to all the families involved.
    Posted by Lisa Beaton on 08/05/2009 12:30:07
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  7. I think the series Born to be Different is excellent, showing the struggles faced on a daily basis by parents of children with disabilities. Ithink that the mum who has just been diagnosed with MS is a wonderful role model for mums everywhere. She is just grateful for what she has got, even though her son is very disabled. I am the mother of a son with autism. He is nearly 24 years\old and since the age of 18 has been in supported living, having left the family home. We see hui=im every week and he comes home often. However, I am often left bereft at the fact that my son who has a mental age of a young child but a body of a handsome young man is being cared for by someone else. There is no support group for parents like me whose children have 'grown up' physically and may be living away from home. It is a grief process and I am interested in starting up a support group for parents like myself across the country. We can share experiences and support one another whilst ensuring we obtain the best care for our children when they live away from home
    Posted by Lynn Coleman on 06/05/2009 18:14:41
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  8. My son is 15 years old and also has Tuberous Sclerosis. I fully understand what William's parents are going through. As I watched the programme last night it was like our familie's life being played back to us. We experienced the same problems as William's parents with behaviour, sleeping etc but we wouldn't change our life. Our son is the most precious gift we have been given and I have the same opinion as William's mum in that there is no point in wallowing in self pity, just get on with life and be thankful for what you've got .
    Posted by Serena on 06/05/2009 09:23:32
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  9. Yet again, this series has had me in both floods of tears and smiling with pride at these fantastic children. I have watched it from the start and have been totally humbled by the determination of the children and the dedication of their parents. I was born with Arthrogryposis, the same condition as Zoey, so I know exactly what she is going through and I just love her attitude to life. I started to watch the programme because I heard it would feature a child with Arthrogryposis but that isn't what has kept me hooked, it is the human spirit, at its absolute finest, which shines through in every one of these families. Please keep this series going, it is such an important piece of television!
    Posted by Carrie on 06/05/2009 00:06:15
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  10. i havnt watched the programme from the start but what i have seen has had me in tears. i was pregnant at the age of 15 and at the age of 16 gave birth to a gorgeoue baby girl she sadly has Cerebral Palsy and sufers with Epilepsy. i am just so proud of her she is making so much progress she will be one in june and she is just perfect in everyway. i will never give up and i will always beleive in you my little Angel!
    Posted by sophie lavender on 05/05/2009 23:22:27
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  11. I have watched your programme from the beginning and feel so inspired that Channel 4 have made such a wonderful programme. I hope you follow the wonderful children and parents for many years to come. Our daughter was born 19 years ago and happened to have Downs Syndrome. She is a beautiful fashion conscious young lady who enjoys her life to the full. Life has not always been easy for her or us, but we have learned so much. She has an older brother and younger sister who are the most level headed, caring individuals, partly because of their sister. Life is sometimes difficult for her as all she wants to do is the same things as her siblings. Society simply does not cater for young adults with special needs in lot of areas. As parents, we have been very pro-active to make sure our daughters needs have been met. This means having very little "free" time as we help run Disability Football teams, Dance and Drama groups and travel the country in search of suitable Discos etc. We would not change a minute of our lives, as having our daughter has made many people question the value of life and come to the conclusion that having someone in your life with a special need, makes life a rewarding selfless experience that makes the "little things" seem just that. To all the those wonderful people who "cope" everyday - stay strong - There are lots of us who truly understand.
    Posted by June on 05/05/2009 22:41:00
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  12. I have been following this since it started and every week its had me in tears. I to have a son wiown syndrome so following little Nathan has been great i to have now come up with some challenges of mainstrean school.I am hoping that this program continues a few more years yet as for me sometimes it helps.
    Posted by karen williams on 05/05/2009 22:34:45
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  13. I have been totally moved by the children and families featured in this documentary. Their bravery and strength is an example to us all.
    Posted by KD on 05/05/2009 22:34:04
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  14. I have followed this programme since it first appeared on tv.It brings tears to my eyes at how brave the children are and it has helped me to know how lucky i am to have a gorgeous 2yr old who happens to have Down Syndrome.This programme shows how these children bring such joy and love to all around them and they were meant to be here.
    Posted by Charlene on 05/05/2009 22:20:54
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  15. Your children are Angels on Earth. I have been having a bit of a tough time, but these wonderful children have made me realise that what I've been going through is nothing. Absolutely nothing. Enjoy your children - I certainly enjoyed watching them (although I feel desperately sorry for the medical interventions they endure with such dignity) and hope that you continue to enjoy them.
    Posted by Jane on 05/05/2009 22:13:25
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  16. I have been watching the children and parents continue their fight with courage and strength. Tonight's episode for some reason was inspirational. I have a Son, he is four, with cerebral palsy, global delay, retardation, deafness, sight issues, physical problems....I don't know what I face with him at nine, but I hope to still be in a positive mind as the parents have shown me tonight.
    Posted by Suzanne on 05/05/2009 22:09:33
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  17. I have been watching this programme for the past few years but it bears particular significance now as I have a 7 month old baby with arthrogryposis, the same condition as Zoey. It is wonderful to see how Zoey and all the other children get on and are so inspirational and determined.
    Posted by Colette on 05/05/2009 00:57:54
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  18. I have watched every program and followed the progress of these children. I think they are all so brave dealing with everything that comes their way. I also admire their parents for being able to cope through everything. I had my daughter in Oct 05, she was born with no fingers on her left hand, She copes wonderful with this. Sometimes I don't, I worry about her but this programme helps me to see that theres no such thing as a "normal" child, they are all different, as long as they are loved and happy thats all that matters. Well done children and Parents, Keep strong. xx
    Posted by Elaine Garry on 29/04/2009 17:47:45
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  19. i have seen every series and feel like the children are part of my family, i laugh, i cry. The children are real stars and have my upmost respect for their determination and charm x
    Posted by janet on 29/04/2009 13:10:30
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  20. Your programme reinforces the theme of my book, Death of a Nightingale. While it may be right for more children with special needs to be educated in mainstream schools they are not "wronged" if they are educated in special schools.
    Posted by Alan Share on 28/04/2009 23:51:45
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  21. Im so glad that all the children are doing well. its lovely to see William, Jessica and their family. Having met William and family through Bati bout kidz charity its nice to see him doing so well!
    Posted by Rach Jackson on 28/04/2009 22:07:29
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