Down’s Heart Group

Posted on July 11, 2008

I was interested to read in the June issue of Focus that some of the Edlesborough Book Group read The Memory Keeper's Daughter by Kim Edwards as their April book of the month and to note their summing up of the many themes running through this novel. Most poignant of course is the plea for disability to be recognised and accepted, which prompted me to write.

Here in our four villages I imagine that over the past 25 years at least, many people have had the opportunity to meet and get to know our residents who have Down's Syndrome, of whom I know there have been at least three in that time and I hope this has increased understanding, awareness and acceptance. I wonder how many of you though know much more about Down's Syndrome beyond the visible characteristics which make it recognisable?

For instance did you know:

• About 1 in 700 babies are born with Down's Syndrome, which means roughly 2 every day here in the UK.
• About 47% of babies born with Down's Syndrome also have congenital heart defects.
• Many require open heart surgery within 3 - 6 months after birth and may need further surgery later in life.
• People with Down's Syndrome have a higher incidence of other medical problems such as Coeliac Disease, Thyroid Dysfunction and hearing and sight problems.

Given the advances in medical treatment, people with Down's Syndrome are now living longer. Many are going through mainstream education, passing GCSE's, finding employment, living in supported accommodation away from their family and even getting married. (To see more of what is possible given support and encouragement visit these websites of just two of the inspirational young people I'm honoured to have met www.karengaffneyfoundation.com and www.sujeet.com)

And how many of you were aware that Eaton Bray is the base for a small national UK charity which provides support and information for families and carers of people with Down's Syndrome who have heart problems? Down's Heart Group was started in 1988 by a group of parents and has been helping families ever since. I became involved after the birth and subsequent loss of my second son Daniel and the Group has been running from my home since about 1990.

We are not big and well known so we don't attract huge financial support like some other charities and being national we usually miss out on local grants which focus on a small area, but we are grateful to have had some support from the carnival. We do provide a vital service for families and without office overheads etc. we are great value for money, but like a lot of organisations lack of funds threatens our continued existence, so in just over 18 months time I hope to embark on a 10 month long fundraising and awareness campaign. It would be fantastic to get some local support having lived in Eaton Bray for 22 years and my husband being Dagnall born and bred.

What I am hoping to undertake is a series of events / tasks which I can be sponsored for either individually or collectively. I'm willing to consider any suggestions but nothing too adventurous please as I've had surgery on both knees and did some irreparable damage when I broke my foot a few years back. The kind of things I'm thinking of are aerobatics in a glider, a balloon flight, driving a Rolls Royce, appearing as an extra on a TV soap, a tandem skydive, perhaps I could even do something at the village carnival?

I'm hoping to be able to do most things for free or at reduced cost and to look for sponsorship to either help cover costs or as a donation. So if you've got any contacts that might like to get involved, please let me know, I'm planning to use my media contacts to get some good publicity over the months and will be more than happy to mention sponsors, wear logos etc.

Oh and I could probably do with someone to help manage all the planning etc. as I'll have to fit it all around my normal work for the charity - anyone fancy being my PA for the year?

Basically I intend starting on January 10th (the date it was confirmed I was pregnant with Daniel) and ending on November 13th (the day he died). Probably the final event will be a dinner dance to coincide with Down's Heart Group's biannual Conference when I hope to invite along many of the young people and families I've been privileged to know over the years.

Why 2010? Well on August 3rd I'll reach my half century and I've decided to try and put a positive swing on what will be a difficult day for me - NOT because I'll be 50 but because on that same day my Daniel would have been 21! So if you can help me to make 2010 a positive year celebrating my son's short life and the marvellous gifts people with Down's Syndrome can bring into our lives, please get in touch.

-- Penny Green, Director, Down's Heart Group, www.dhg.org.uk

Source: Focus, July 2008