Monday, 26 December 2011

On the 2nd day of Christmas ...

It seems obvious for the 2nd day to talk about twins. I know several sets of twins who both have Down's Syndrome, but today I'd like to mention a family who have one twin who could use our thought and prayers.

May I introduce the Hext twins, 5 year old Harvey and Spencer who you may have seen on this years Noel's Christmas Presents when their family went on a trip to Lapland and the boys met another set of twins, Jedward.

Harvey and Spencer Hext
Spencer and Harvey are identical twins who have Downs syndrome, which makes them fairly unique as there are only a handful in the UK, but Harvey is even more unique. In June 2010 he was diagnosed with stage 4 Neuroblastoma, a very aggresive childhood cancer and he is the first documented patient in the world to have Down's syndrome and be treated for it, meaning that there are no comparable reference points for his treatments, as the medical team have no experience on the amounts of drugs his modified genetic makeup will cope with.

Harvey has amazed his family and his doctors with the way he has coped with the chemotherapy and MIBG therapy he has been given, he has also recovered very well from a 14hr operation to remove the primary tumour in his stomach, but throughout the awful treatment he has had to endure, he has remained spirited and inspirational. Sadly though,

Harvey has not responded to the chemotherapy as everyone had hoped he would and although his consultants are still treating Harvey's cancer as cureable at the moment, treatments in the UK for Neuroblastoma are limited so his family are currently looking to raise £300,000 as it is most probable Harvey will need treatment abroad that is not covered by the NHS.

If you would like to donate to Harveys fund please do so using this link FAN Harvey Hext  (Donating through this page is simple, quick and secure and if you are a UK taxpayer and give Gift Aid consent the charity will receive extra at no cost to you.)

Sunday, 25 December 2011

On the 1st day of Christmas ...

I'm hoping to find time to make a blog post every day of the 12 days of Christmas, primarily about friends with Down's Syndrome, but I'd like to start today with a short blog in honour of my mum.  Right from the time my special boy was born, she accepted him without question and was supportive of my work with Down's Heart Group.  So I think it only fitting that I start with her as she was the primary influence of my formative years and instilled in me the values of acceptance and inclusion that are at the root of everything I do.

A week ago the wonderful lady that brought me into the world had her 88th birthday and today we shared an hour of companionship together at the care home where she has been resident for the last 9 months.  We sat and chatted as she opened the cards and presents that I had taken in for her and whilst it didn't match the level of communication that we shared in the past, I was thankful that today she was at least aware of who I am.  

Mum and I during my visit today
The past 12-18 months have been a difficult journey for me as I've had to come to terms with her diagnosis of dementia and the rapid deterioration she has experienced.  It's been hard to watch someone who was so fiercely independent and capable become totally reliant on assistance from carers and harder still to witness her memory loss which means that much of the time she has no idea who I am.  But, I'm trying to see something positive in all of this and perhaps my experience will in some way help me support families who sadly have to face a diagnosis of Alzheimers in their loved one with Down's Syndrome.

I started out nearly 22 years ago with the idea of using my experience of having Daniel -  getting the diagnosis, going through the bowel and heart surgeries and his death - to try and help other parents in some way, so I'm trying to approach mum's diagnosis in the same way.  Mum's thankfully unaware of her situation which I am so grateful for and from my point of view I'm trying to see what I am learning as something which gives me firsthand knowledge that I can hopefully pass on to others.