Thanks for taking the time to visit my JustGiving page in aid of Derian House.

Hi, Im Catherine. I was born 8 weeks early back in February 2009, my mum underwent an emergency cesaerian section and i was delivered along with my twin sister Abigail. My sister and i were rushed into the Neo-Natal unit and spent the following few weeks in an incubator keeping snuggly warm, i dont remember but i was attached to allsorts of life saving equipment. I had regular visits from my big brother William who used to reach up and hold my hand. William couldnt understand why i had an extra little toe on each foot and an extra little finger on my left hand. The hospital staff were also curious and decided to have a genetics test done, the results came back and after several second opinions it transpired that i have a rare condition called Trisomy 13 which is also known as Patau Syndrome.

The consultant looking after Abigail and I told my mum and dad about my condition, he told them that i would be lucky to survive for 1 - 2 years and that they should prepare for the worst. My mum and dad were devastated, this bad news left them feeling empty, guilty and heart broken. They have since learned that my condition is not because of anything they have done and could not have been prevented, it was just unfortunate. As the weeks went by, the full genetics report was available and it turns out i have a mosaic form of Patau Syndrome, which is even more rare!

I am OG tube fed at present and i have a cleft palate, so ive not been able to eat like my brother and sister do. The good news is that i am waiting for an operation to have my cleft repaired and the doctor is going to fit a PEG feeding tube to my tummy so i can get more nourishment and be fed overnight whilst im sleeping, this means i'll be able to play more during the day!

As you can see from my picture, i look perfectly normal so im not sure how i'll be affected - saying that, i am a little behind Abigail in terms of development. What i mean is, Abigail is a big head - she can clap her hands, sit up unsupported, almost speak and when it comes to eating.... she's like a machine.

My mum and dad have been told that i am deaf, not completely but probably about 99% - well thats what i let them think, i watch TV sometimes and its a blessing that i can't hear William and Abigail playing because they are very noisy.

My mum chose Derian House as our charity because they take me to their lovely hospice sometimes, at the hospice they have specially trained people to look after me and give me lots of attention. I have my own room when im there and there is a special room that has some fancy lighting and three great big glass tubes that have different coloured bubbles and lights in them. When im at home, one of the team members from Derian visit me every week and play with me, i think my favourite is Frank - he has a bushy beard and is very funny. When Frank comes to my house we sometimes paint our feet and print them onto canvas, put them in key rings and give them to mum and dad for them to keep. Sometimes we make wind chimes and snow globes, its lots of fun!

ooh, before i go - please look for the links on my page in case you need to know any more information about my condition and about Derian House. 

Now for the exciting bit.......

My mum and uncle John are taking part in the Great North Swim on September 4th 2010 so we, as a family, can show our appreciation for the Derian House team and hopefully raise some much needed funds along the way.

We really hope to raise as much awareness as we can for the wonderful work, care and support that the team at Derian House offer to families in similar situations to ours.

Please show them the appreciation they deserve and assist them in “making the most of every moment for children whose moments will be all too few”.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.

 

thank you for looking at my page,

 

Lots of love, Catherine x

 

http://medical-dictionary.thefreedictionary.com/Patau+syndrome

 

http://www.greatswim.org/