Down's Heart Group newsletter 51 notification and link for Friday 25 July 2014Dear Down's Heart Group member or supporter,
this email is to let you know you can access our latest newsletter, Issue 51, by following the link
http://www.dhg.org.uk/getfile.aspx?166&e=.pdf
or by going to the website www.dhg.org.uk and searching on the newsletter tab.
Please see below any urgent news that missed the deadline and can I draw your attention to the fact that there are still places left on our activity weekend at the end of August (see below)
HURRY!! There are still a couple of places available for the DHG activity weekend. This FREE action packed weekend for over 16's is taking place at Culmington Manor, Ludlow on 29th - 31st August 2014.The youngsters will follow a full programme of outdoor activities, supported by fully qualified staff from manor Adventure plus peer support from members of Grown Up Congenital Hearts, now known as the Somerville Foundation.
Carers/parents will follow a different timetable, with pampering, relaxation and chilling out being the main attractions!
Other family members are more than welcome but DHG will need a financial contribution for extra attendees.
Please contact Sarah on sarah@dhg.org.uk ASAP
18th October 2014 Annual Conference
10am-4pm
Young Peoples'
get-together
12pm-3.30pm
More info & to book
conference@thesf.org.uk
or call
Helen on 01473 252007
Inspection of Norfolk Community Health and Care NHS Trust will take place from 15th of September 2014. Services include adult respite care, podiatry, community nursingsupport, dental services, community hospitals, health visiting, palliative care and physiotherapy.
The inspection team is very interested to hear from anyone who has used services in the last 12 months by Monday 1st September 2014. Please send your experiences to
chinspections@cqc.org.uk by post to CQC, Citygate,
Gallowgate, Newcastle upon Tyne NE1 4PA, or you can ring CQC on 03000 616161.
Please put the name of the service you are sending information about in the title to help us pass it to the right inspection team.
www.cqc.org.uk
Obstructive sleep apnoea in Down Syndrome•We want to find better ways of identifying breathing problems which affect some children when they sleep.
•If your child has Down syndrome and is under six years of age, we’d love to hear from you.
•To find out more about this study please contact our research nurse Jane Martin on 023 8079 4989 / 07784526555 or e mail on jane.martin@uhs.nhs.uk.
As you will see on page 15 of the newsletter, Nice is requesting comment on "Telemetric Adjustable Pulmonary Artery Banding". The deadline for submission has been extended to July 31st 2014. Please refer to newsletter for full details.Our mailing address is:
info@dhg.org.uk
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http://www.dhg.org.uk/getfile.aspx?166&e=.pdf
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dhg down’s heart group Newsletter Autumn 2014 Issue 51
This Issue;
News
Members Stories
Book Reviews
and more....
Chair’s Report
Chris Stringfellow
Contents
Tom Eastwell (see Easy Read pages) Front Cover
Members stories 4
Easy read pages 8
Meet the DHG team 10
Fundraising report 12
Future events 14
Information 16
‘I Love You Natty’ Back cover
Letters and articles reproduced in this newsletter express the opinions of the authors and are not necessarily representative of the views of Down’s Heart Group.
Original material may be reproduced provided Down’s Heart Group is credited.
Permission for other items must be obtained from the original source.
Annual General Meeting
The Down’s Heart Group Annual General Meeting was held on Saturday 17th May in Birmingham. Very few people attended, which was a shame as it is a great opportunity to have your say and help shape the future of the charity.
The majority of the committee stays the same, with just Grace Smith stepping down from a three year term and Alice Croot being formally elected as fundraising officer.
Chair - Chris Stringfellow chris@dhg.org.uk
Vice Chair - Peter John peter@dhg.org.uk
Secretary - Nina Lawson nina@dhg.org.uk
Treasurer - Phil Thorn phil@dhg.org.uk
Fundraising Officer - Alice Croot alice@dhg.org uk
General Committee - Helen Laverty, Richard Mowberry, Roberta Nathan
Finances are in good order but fund raising and grant applications need to be worked hard on so that we can maintain the level of service.
Next year’s AGM will take place at the Conference and Family Fun Weekend on 16th May in the Somerset area. Date and venue to be confirmed.
The Trustees work hard to keep Down’s Heart Group going from strength to strength.
To evolve and change with the times needs fresh ideas so we always welcome any feedback or advice from the membership. After all it is your group!
Over the next few newsletters we will running question and answer pages introducing all the DHG staff and trustees. This will hopefully give readers a bit of background information on those involved in the charity.
If reading about our team inspires you to come forward to offer any time or skills please get in touch on any of the email addresses above or info@dhg.org.uk
0844 288 4800
Members Stories
Lucy
I’d like to thank everyone at National Office, especially Penny, for all the years of support and help. I can remember the days when Penny ran the office from under her stairs!
Lucy was born in 1991 and her birth family decided that it was best for all if she was to be adopted - I first saw her when she was less than a day old. Lucy had an ASD and VSD, problems with her kidneys, reflux, hypomobility and capillary fragility. I
can still hear the paediatrician saying “she may not go 12 days”. My reply was “every baby deserves to die with the love of a family around them” and on that understanding I brought her home four days later. I walked her around and told her she could think on if she thought she was dying on my watch!
Our first consultation found the VSD had healed on its own and over time the ASD has become so small that Lucy has not required surgery. Likewise, after three years on antibiotics Lucy’s kidney problem was resolved and one of the positive outcomes from being on them was that Lucy didn’t have the usual coughs and colds. I also believe the knock-on effect was that her speech has been much clearer than some of her friends with Down’s Syndrome.
The prognosis was poor, but Lucy was and is a fighter, she also has a very positive (some would say bossy) nature.
Lucy’s reflux problem hasn’t given her much trouble and as she got older she has learnt what she can eat and what to avoid.
One of Lucy’s mystery conditions started at 5 months old when she would scream for up to six hours for no apparent reason and a day or two after a screaming bout she would pass black sticky stools. Tests revealed that Lucy was bleeding internally but it was never established where from. As Lucy wasn’t overly anaemic it was a joint decision to wait and see rather than operate. The bleeds lasted until she was four and a half years old, when they simply stopped and haven’t reoccurred since.
Lucy has been horse riding from an early age - her first clear word was “stirrup” at three years. Within a couple of months she had a vocabulary of Lucy with an early riding certificate.
After 6 weeks of treatment Lucy’s levels had risen to 100, and she is now on life long daily medication to maintain these levels. She will also undergo annual Bone Scans and Consultant appointments.
My question is how many people with Down’s Syndrome might be suffering from undiagnosed Osteoporosis?
Lucy is now 23 and is a hardworking, active young lady who loves working outside and dancing.
By looking at Lucy no one can tell that she has Osteoporosis, therefore it is important that any fall or accident is recorded and that she is seen by a Doctor, to confirm that she has no fractures.
Lucy is also at risk of spontaneous fractures of her vertebrae. Lucy understands that she can no longer ride and has to be sensible in her actions.
Gwen Thomas
Hampshire
Anthony Jacoby
Anthony Jacoby, “AJ” is only 5 months old and has gone through 3 rounds of GI surgery and has two holes in his heart – which are expected to heal naturally.
Throughout his journey in life he has still been able to reach infant milestones like any other child.
His biggest achievement is being able to sit up independently for short periods of time, and also being introduced to eating baby cereal.
He loves to smile and laugh. He’s very ticklish and loves bath-time.
Jessica Witherspoon, Indiana USA
Amber
Amber is now 8 years old. She was born 3 weeks early and had, amongst other things, an AV septal defect. She had many heart scans over her first few months and when she was 7 months old we were told the great news that the hole had almost fixed itself,
leaving her with a heart murmur that would have to be monitored but that no surgery would be needed.
Amber attends a mainstream school and is doing very well. She joins in with the lessons, loves books and is brilliant at reading, and is accepted and included by everyone.
In year 2 she was nominated and elected by her classmates as a school councillor to represent them and their views at school council meetings, where she came up with the great idea of having a cake stall at the school fair to raise money.
Amber is accepted and included by everyone.
Amber works very hard at school, and this was rewarded recently when she received a special award from the headmistress for ongoing effort and attainment in all areas. It was presented to her in a whole school assembly, which my partner, myself and Amber’s Grandad were privileged to attend. She had to go up in front of over 300 children plus the staff to collect her certificate from the headmistress.
She was very nervous but held her head high and made us very proud. Two of her classmates read out a list of things that Amber is known and loved for, which included always looking after them when they are upset or hurt, making them laugh, working hard
and her amazing knowledge of and love for animals.
The applause rang through the school.
The applause rang through the school.
Every day Amber makes us so proud and glad that we are her parents. She has the power to change people’s attitudes and lives just by being herself, and what a gift that is.
Mags Quennell, Cornwall
Tom’s Holiday
Tom has sent us some photos of his holiday.
Tom went to Thailand to see his twin brother, Ben.
He met lots of exciting animals.
Tom learned a new dance.
Here is Tom’s letter. We think his writing is great!
Can you tell us all about you? We would love to put your photos on this page.
Alice Croot - Fundraising Officer
Why did you get involved with DHG? My brother had Down’s Syndrome and CHD but sadly died when only six months old. DHG were a great comfort to my parents and although not old enough to remember Sam, I have memories of people we met through DHG and stayed in touch with as I grew up.
What made you volunteer to help? I ran a marathon last year for DHG.
Penny remembered my family and this along with the support throughout the training made me want to do more. It’s fantastic to be involved in a charity that does such great work, knowing that you really can make a difference.
What do you think you bring to the role? I’m still very new to it! I am enthusiastic and have raised money before, including running a ‘Santa Fun Run’ (very good fun!) and shaving my head (not quite as fun). I bring personal knowledge of how DHG can help, motivating people to collect that little bit extra in donations, hopefully.
Occupation? I’m a support worker, working with some people with Down’s Syndrome. I am also studying for a post graduate degree in eighteenth century history and culture.
Hobbies? I love books and read at a ferocious rate! I like seeing my friends and visiting my parents. I enjoy films, walks and the occasional run. I have made a few wedding cakes in the last year.
Family? Dad, Tim, works with the army and mum, Becky, worked as a nurse.
They live in Germany. My younger brother, George, is a butcher but is joining the army as an engineer. Sam would be 24 now - he is still very dear to us all.
Pets? My parents have a border collie called Pepe, after the French skunk in the cartoons. She has one brown eye and one blue.
Age? I’m 25 What do you see for the future of DHG?
Support for even more families and further links with other groups supporting those with Down’s Syndrome.
Favourite cake? I’m very fond of carrot cake with dates and walnuts!
Embarrassing moment? Too many to say!
Claim to fame? I sang at the Royal Albert Hall with the Hampshire Youth Choir.
Penny Green - Director
Why did you get involved with DHG? In August 1989 on my 29th birthday I gave birth to our second child Daniel. On day 4 we were transferred to Great Ormond Street Hospital as he had heart and bowel defects. He spent the next fourteen weeks either at GOSH or our local hospital before he sadly died in the November.
What made you volunteer to help? I was supported by the group, so it felt natural to want to give something back although I never imagined back then where it would lead!
What do you think you bring to the role? A little bit of personal experience, acquired knowledge and a passion for supporting and informing parents and carers.
Occupation? In the dim and distance past I worked in a bank, but for the past 24 years I’ve been with DHG and Director for the past 10.
Hobbies? Family history, travel when I can.
Family? Malcolm, long suffering hubby of 34 years without whose support I’d never have been able to get so involved with DHG. Andrew 26, Michael 23 and Sarah, almost 21. Andrew is older than Daniel but sadly cannot remember him. All three of them have
always been outspoken advocates for people with learning disabilities.
Pets? A German Short Haired Pointer called Fidget (who sometimes tries to sit on my lap in the office!) and a Siberian Husky call Kiera.
Age? I would say “no comment”, but for anyone that can remember me having pink hair in 2010 to celebrate my 50th and Daniel’s 21st, it’s not exactly difficult to work out that I’ll be 54 in August.
What do you see for the future of DHG? Hopefully many more years of supporting families, providing information and advocating on their behalf. Ideally some new blood to come in and pick up the reins from old folks like me and to continue to evolve the role of DHG according to the needs of it’s members, whilst maintaining the vision that our Founder Linda Walsh had when she started it all.
Favourite cake? One without any calories.
Embarrassing moment? Too many! And I’d sooner forget them than go public!
Claim to fame? Probably the pink hair.
London Marathon 2014
DHG had 5 runners this year and they worked extremely hard to raise funds for us.
Thank you all so much!
Laura Stevens and Chris Deas
My dream was to run the Marathon and I ran in memory of Tom Pow and my Grandad Pop, two heroes in heaven who were with me every mile! I had horrendous knee problems and was told not to run. Thankfully, a new physio gave me the right exercises and the confidence to go for it.
I was due to run with Paul Smith, but he had to pull out a few weeks before.
I was also running with Chris Deas, a close friend. Chris trained so hard! He changed his whole lifestyle and raised an amazing £1,641.00! He was so nervous on race day but really kept our spirits up. We started off together and after about a mile we split as he had a time he wanted to beat.
Unfortunately at the half way mark I caught up with Chris and he was so poorly. He was taken into an ambulance where I waited with him for about an hour, but he could not continue as he had a really high temperature and had collapsed twice,
After leaving Chris at the half way mark, I met a women called Donna. We walked and ran the last stretch together both
struggling with our knee pain, and then finally running up the last 200 metres together!
What an amazing day. The London Marathon 2014 was an experience to say the least, I cannot thank my family and friends and the crowd enough for their amazing encouragement. It was hard
but I did it and I will never forget what an emotional roller-coaster it was. I am so proud to have taken part and have raised
£1500.
Laura
Layla and Richard Batchelor
Husband and wife team, Richard and Layla ran the full 26 miles together. Here Layla explains why:
I ran the London Marathon because I wanted to set myself a challenge. Richard did it to support me and to help me achieve my goal.
We chose to raise money for DHG because I did a post graduate course with Chris Stringfellow, the Chair’s daughter, Helen. I also lived with her for a little while. I have helped out in the crèche at an AGM and have therefore seen what a worthwhile
charity it is.
Layla and Richard
Paul Smith
I was really disappointed not to have been able to run due to illness, but it was the right decision. We had a great day watching Laura and Chris. They did brilliantly and we are
very proud and grateful to them for attempting such a massive task, especially Laura who then had to run on her own after Chris had to drop out.
My incentive to run is in memory of my nephew Tom Pow. He was a very lovable and mischievous boy who even though he had corrective surgery died of complications 18 months later unexpectedly at the age of 15 in 2002.
I have now run 6 marathons in his memory and all funds raised went to DHG. DHG supported my sister in law Lorraine, Tom
and his twin brothers Jamie and Jack through his surgery.
Tom’s family have supported the DHG with numerous charity golf days since he died which have been well supported by friends
and family. It is a great charity and we will continue to do as much as we can to raise awareness and money.
Paul
Activity Weekend
We still have a few spaces left on the Down’s Heart Group Activity Weekend
29th - 31st August 2014
Manor Adventure, Ludlow, Shropshire.
This is a free event for over 16’s plus a carer.
Other family members may be able to attend, depending on availability, but may have to make a financial contribution.
There will be professionally organised activities during the day for the youngsters, whilst parents/carers have a chance to relax
and enjoy themselves knowing they are not too far away.
Families are for their own travel costs, but DHG may be able to assist if this is an issue.
Places are going fast so please contact us as soon as possible for more details and to book a place.
sarah@dhg.org.uk
0844 288 4800
Pulse Oximetry Success
Public Health England is extending Pulse Oximetry screening on newborns to all hospitals as soon as possible. This quick, painless and cheap test measures oxygen levels in blood and
can detect over 90% of life threatening heart defects at birth.
For more information on the Children’s Heart Federation’s Pulse Oximetry campaign visit www.chfed.org.uk/pulseox
Family Fun Day
The Disability Strand Group of Families First are holding a
family fun day from 11am to 3pm on Friday 15th August 2014
at Palmerston Community Learning Centre, Cadoc Crescent,
Barry, CF63 2NT for all families who have children with special
and particular needs. The aim is for children and young
people to have fun and for parents and siblings to find out
what services and activities are available. There will be sports
activities, play, dance, music, sensory equipment and much
more. Families will also be able to sign up to the Disability
Index.
01446 704736
www.valeofglamorgan.gov.uk
Adjustable pulmonary artery banding for reducing pulmonary hypertension in infants with congenital heart defectsNICE is looking at a very specific type of procedure called ‘Adjustable pulmonary artery banding for reducing pulmonary hypertension in infants with congenital heart defects’. Adjustable pulmonary artery banding is used in young children who are born with heart problems. In this procedure a metal band is clipped around the blood vessel which carries blood from the heart to the lungs in order to restrict the blood flow and reduce the high pressure in this vessel. The tightness of the band
can be adjusted at any time using a remote control, without the need for further surgery.
NICE welcomes comments from the parents or carers of patients who have experience of this procedure, but also from any patient or carer who would like to comment on the guidance in general.
If you would like to be sent a link to the consultation document or would like to submit any comments please contact Heidi Livingstone in the Public Involvement Programme.
Heidi.Livingstone@nice.org.uk
020 7045 2183
Play and Leisure: Your Rights
Adapted, with permission, from an article written by Polly Sweeney of Irwin Mitchell Solicitors, which appeared in the Spring/Summer 2014 edition of Contact a Family’s newsletter, ‘Connected’. For information on local play and leisure, look out for their “Holidays, Play and Leisure Guide” due out soon.
There is a duty under section 25 of the Children and Young Person Act 2008 for local authorities to provide “breaks from caring to assist parents and others who provide care for disabled children to continue to do so.” These “short breaks” should form part of a child’s care package, either directly commissioned or provided as a direct payment.
The Breaks for Carers Of Disabled Children Regulations states that local authorities must provide a range of short breaks in their area, including daytime care in or outside the child’s home and educational and leisure services.
In addition, play and leisure opportunities are available under the Chronically Sick and Disabled Persons Act 1970 and under the Childrens Act 1989. These might include: provision of leisure facilities, occupational, social, cultural or recreational activities, assistance to enable your child and family to have a
holiday and travel assistance.
Article 31 of the United Nations Convention on the Rights of the Child also states that children have a right to relax and play and to join in a wide range of cultural, artistic and other recreational activities.
The Equality Act 2010 places a legal duty on organisations to make reasonable adjustments to their policies and premises and to provide auxilary aids and services to avoid discrimination. Disabled children cannot be forced to meet any additional costs for these reasonable adjustments.
You can request a copy of the local authority’s “short break service statement”, which sets out details of services provided, eligibility criteria, etc.
You should request an assessment of your child’s needs and also an assessment of your needs as a carer. The time frame for assessment is a maximum of 45 days from referral. The care assessment should then include a “plan of action” stating which services are going to be provided and by whom.
0808 808 3555
www.cafamily.org.uk
Embody Dance
Embody was formed in June 2009 by Community Dance
Artist Emma Breeze. Based in Coventry, Emma runs dance
classes all over the West Midlands and caters for all levels
and ages.
The Tiger Feet programme for people with disabilities has
had fantastic results and encouraged many people to give
dancing a go.
07533 916231
embodydance@hotmail.com
www.embodydance.co.uk
Thomley Activity Centre
Thomley Activity Centre is a Buckinghamshire based recreational and educational facility for disabled children and teenagers, and their families.
It is situated in 7 acres of beautiful countryside. All facilities are fully accessible and securely enclosed, and include a soft play area, music room, sensory room, cycle track, art room and much more!
01844 338380
enquiries@thomleyactivitycentre.org
www.thomleyactivitycentre.org
KIDS
KIDS is an organisation supporting disabled children and young people to develop their skills and abilities. They provide a wide range of services to disabled children, young people and their families.
The website is full of really useful information on personal
budgets, short breaks, availability of schemes and advice on getting the best for your child.
www.kids.org.uk
Little Eden
Dawn and Glenn Harvey have transformed their garden in Sutton, Surrey, into a magical place for families with a member with special needs.
They throw their gates open every Monday and Friday afternoon from 2pm to 6pm so that youngsters of all abilities have somewhere stimulating but safe to play.
Parents get to relax, chat and build up a really useful network.
Tate Harvey was born in 2007, seven weeks early, with Down’s Syndrome, a VSD, bowel problems and talipes, which means he still doesn’t walk. He is the inspiration behind his parents desire to spend all their savings and years of work developing the ordinary back garden into a centre with heated pool, a tree house, sensory equipment and fun apparatus, as well as quiet areas. Dawn and Glenn tend the beautiful gardens, which is
hard work but extremely rewarding.
Dawn says “We provide soft drinks, sandwiches and snacks for the children throughout the afternoon. The kettle is on all day for parents and carers and one of our mums always brings along homemade cakes or biscuits!
Little Eden took six years to develop and opened in 2010. Since then the Harvey’s have done a huge amount of fundraising to ensure the equipment and pool can be maintained and that new toys and activities can be provided. Indoor space has also been created, just in case the weather is bad.
Little Eden is free, but there is a charity box in which every penny goes towards the upkeep of the garden, and for food and drinks for the next session. It is not compulsory to put in, but every little helps!
Needless to say Little Eden is very popular and families need to contact Dawn for a session slot on
020 8644 4567
dawn@littleeden.me.uk
Communication Project
How effective is Makaton sign language in supporting the transition between non-verbal to verbal communication in children with Down’s Syndrome?
Jessica Phillips is developing an academic research basis to
support the use of Makaton and communication in children with Down’s Syndrome. She is looking for families to help.
Children will be tested using the Kaufman Assessment Battery for Children. It contains 4 play based tasks assessing auditory and visual communication skills. Families will then be interviewed on their perspectives of communication development.
Involvement is anonymous and confidential and you can withdraw from the study at any time. Please contact:
07527505354
phillipsjl@cardiff.ac.uk
There is also a Facebook page relating to the study:
www.facebook.com/downssyndromecommunicationproject?ref=bookmarks
Carer’s Allowance Online Service
Introduced in October last year, the new Carer’s Allowance
Online Service allows carers to make a claim for Carer’s
Allowance using the internet. As well as making new claims, claimants in receipt of Carer’s Allowance can also now use the service to notify the Department of Work and Pensions of a change of circumstances.
Carers have been able to make claims online for some time, however, this revised service is quicker and easier to use. So far, over 15,000 carers have made a claim using the new service with very few problems reported.
The service is available 24 hours a day, seven days a week and once a claim has been completed and sent online, it is received immediately by the Carer’s Allowance Unit helping ensure that a decision is made as quickly as possible.
The service can be accessed from smart phones and tablets as well as computer and lap tops.
www.gov.uk/apply-carers-allowance
Margaret (Peggy) Fray
Author Margaret Fray, known as Peggy, passed away earlier this year at the age of 90.
Her book “Caring For Kathleen - A Sister’s Story” is about Peggy’s life caring for her younger sister, Kathleen, who had Down’s Syndrome and developed dementia, but lived a good life, reaching the age of 70. It reflects the changing shape of services over the past 70 years and the huge gap in provision for people with a learning disability who develop dementia.
After the launch of the book in 2000, Peggy became a Trustee for the Down’s Syndrome Association and campaigned for automatic access to specialist dementia care for those that needed it. Peggy worked hard giving sound advice and was a fierce advocate for many.
Published by BILD, available from them or from Amazon ISBN 978-1-902519-19-7
Joel - An Unexpected Hero
Jane Butcher comes from a family of authors but steered clear
of the profession by becoming a teacher until she adopted her
son Ben, who has Down’s Syndrome, when he was 4 months old. Ben is now 23 and was the inspiration for Jane’s book.
Joel - An Unexpected Hero is the tale of a brother and sister.
Rebecca loves her younger brother Joel, but sometimes she finds it hard to look after him – Joel has Down’s Syndrome.
One day, when Rebecca and Joel discover a ring of toadstools
used by elves, they find themselves transported into a magical
world in which Joel is the hero. Soon Rebecca discovers that
her brother possesses very special qualities that she hadn’t
noticed before…
Published by Onwards and Upwards, available fromAmazon
ISBN 978-1907509742
Inclusive Films
‘A Real Home A Real Life’ is a film about people getting closer to the lives they want.
This is a UK film showing eight people with learning
disabilities and the different ways they have moved
into a home of their own, showing the different
support they receive and how they are getting closer
to the lives they want to live.
This and other films are available free of charge on DVD or can be viewed on the website.
0121 455 0485 www.inclusivefilms.org
My Future Choices
My Future Choices is a free magazine for disabled young people, their families and people who support them.
It is produced by Transition Information Network (TIN), an
organisation working to improve the experience of disabled young people’s transition to adulthood. Their aim is to provide information about the transition process that is useful for all involved.
Visit the website for more information or to read the latest
issue of the magazine.
www.transitioninfonetwork.org.uk
Safety Harness
Many of our children are extremely good at escaping their car seats or running off when out and about. They can undo regular buckles and clasps and hypomobility allows them to wriggle out of almost anything!
Crelling Harnesses provide a range of safety belts and harnesses for use in the car, out walking or on a plane.
The restraints come in all sizes up to adults.
01253 852298 info@crelling
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Further information about Down’s Syndrome is available from:
Down’s Syndrome Association
Langdon Down Centre, 2a Langdon Park
Teddington TW11 9PS
0845 230 0372
www.downs-syndrome.org.uk
Down Syndrome Education International
6 Underley Business Centre
Kirkby Lonsdale, Cumbria LA6 2DY
0300 330 0750
www.dseinternational.org
Down Syndrome Ireland,
Citylink Business Park,
Old Naas Road, Dublin 12
00 3531 426 6500
www.downsyndrome.ie
Down’s Syndrome Scotland
158 - 160 Balgreen Road
Edinburgh EH11 3AU
0131 313 4225
www.dsscotland.org.uk
Further information about heart related issues is available from
British Heart Foundation
180 Hampstead Road
London NW1 7AW
0300 330 3311
www.bhf.org.uk
Children’s Heart Federation
Level One, 2-4 Great Eastern Street
London EC2A 3NW
0808 808 5000
www.chfed.org.uk
(formerly GUCH) The Somerville Foundation
Saracen’s House, 25 St Margaret’s Green
Ipswich IP4 2BN
0800 854 759
www.thesf,org,uk
PHA UK
Unit 2, Concept Court
Manvers, Rotherham S63 5BD
01709 761450
www.phassociation.uk.com
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I Love You Natty
Written by big sister Mia with help from
her mum, well known writer Hayley
Goleniowska, ‘I Love You Natty’ is a
wonderful uplifting introduction to
Down’s Syndrome from a sibling’s
perspective.
With simple text and colourful
graphics incorporating some beautiful
photographs, it talks about Natty having
a heart problem and needing to stay in
hospital for a while.
The book touches on the emotions
of Mum and Dad and mentions some
of the extra support Natty needs. But
the overall message throughout is that
having a little sister is fun, that the girls
share wonderful adventures together
and love each other unconditionally and
that for Mia, that extra chromosome
makes absolutely no difference!
The book is available from Amazon at
£5.99 plus postage or can be ordered
into any Waterstones store without the
postage cost. ISBN 978-0-9929251-0-9
And you can follow the family’s journey
on their award winning blog
www.DownsSideUp.com
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