Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)



You have a sister !!!

The happiest words I could have heard I had spent so much time praying that I would get a sister and not another brother, I would have been 10 then……..

I will never forget the day Dad came home and told us we had a sister, it was a lovely sunny day in March and my brothers and I were outside playing. We rushed to our neighbours to tell them that we had a sister however when we came back home my Granny came out and told us that we could not go into the house as Dad was talking to my Granddad.

My Dad eventually came out and explained to us that we had a sister but that she was  very special but we didn’t know any better but that she was special to us whatever the case, even at that stage mum and dad didn’t even know exactly what was wrong or what the condition she had was. The next memory I really have is of my brothers and myself in Church with my Grandparents beside the Glenthworth Hotel which Dad managed at the time, that is a day I will never forget a colleague of Dads came into the Church and told us we had to go to the hospital as soon as possible as Elaine was very ill and they were sure she was not going to be with us for very long (I have never seen my Grandad drive so fast in all my life). When we got to the Hospital we were left for a while as my Grandparents went in to see my parents and Elaine. Then we were brought in for the first time, to as the hospital said “say goodbye to Elaine”, our sister, whom we were about to first meet. She was so small in her incubator, cleft lip and hooked up to every possible tube you can imagine we didn’t want to hold her as she was so small but we were forced by the hospital, as we wouldn’t have the chance again to hold her. I do resent the hospital for this as even to this day one of my brothers still won’t go to visit her on the occasions she has been admitted to hospital due to that day years ago… Then there was the four heart failures on her 1st Birthday and the occasional scare being rushed into hospital for all various of infections, but no matter how bad she fought them all.

Well who’s laughing now 22, ….. years later and the light of our family is still here larger than life (nearly as tall as me, I definitely got the small genes in the family). Its hard to believe she is going to be 23 this March and has proved so many people wrong, she is the one laughing at them now. I have many sad memories but the happy ones are greater by far, her 1st Holy Communion, her 10th birthday, her Confirmation, her sweet sixteenth birthday her Graduation from School, her 21st Birthday, being my Bridesmaid for my wedding and Junior Bridesmaid for David’s Wedding and every single day that she’s in my life.

I must say though she is a pure tomboy not at all into girlie things would much rather be in the middle of a wrestling fight with her two brothers.  But she will stay awake in her bed until everyone of us are in from our nights out and when she has the final kiss from the last of us home she will then go to sleep. Or if there is a party in the house she’s not happy till she’s in there in the middle of it.

She has her good days and her bad days like everyone else. But her good days by far out way the bad ones. Our favourite time was night, when we share a room and its funny in a way as the slightest little noise from her and I automatically wake up even several times over the years while she is sleeping I would wake her up just in fear that she may not be breathing. But without her beady eyes looking over I would have been lost, we read stories and I talk to her about my day and ask her about hers even though she can’t reply in words I imagine what her day is like and answer for her about school, boyfriends (which may I say she has many) and general chit chat.

Now that she is the only one of us now left at home she keeps Mum entertained and of course helps with the cooking of dinner and crossword puzzles that Mum loves driving us all mad with looking for the answers! Dad out of mischief he has even learned so many new skills since just the 3 of them at home! But every day I and the lads call in or phone just to check up on her hectic day at work (school) where she may have baked cakes, painted pictures or had music classes.

Elaine has brought so much love in our family she is like a Sunflower just brings a ray of light to every room she is in and all our lives revolve around her and we wouldn’t have it another way. Since that day she was born she has bonded our family in a way that is indescribable and I truthfully believe that she is a fighter and survives on the love that she gets from all the family especially Mum who is with her all the all the time she is not at home. It is hard not knowing what her future will be but we all don’t really think about that we just live for every day she is with us and she will be with us for many many more, she has stunned many specialists and a lot of people and she will continue to stun them with all the love she get and the love she gives.


Nicola  xxxxxx

You are a Sister

That truly shines

Bright as a star

In the darkest of times

Knowing you’re my Sister

Makes me so proud

You would stand out In any crowd

You my dear Sister

I truly love

You’re as bright as the stars

That shine above

Sal love Lal