An Extra Chromosome

March 21 is World Down syndrome day, a day, like every day we celebrate the joy Lizzy has brought to our lives.

I was 20 weeks pregnant when we found out the beautiful baby I was carrying had a chromosome abnormality. It never made a difference how much we loved the precious little girl we had name Elizabeth, after Elizabeth Bennett from Pride and Predjudice, it was never a choice to make, it was just an extra chromosome that Lizzy had.

Dave and I often say "I wonder what Lizzy would be like if she didn't have Down syndrome???" The answer is the same EVERY TIME "Lizzy wouldn't be Lizzy without DS!" As a family we really believe this. Every little thing Lizzy does is her. Every little word, cuddle, strong willed action is our wonderful daughter and maybe the extra chromosome is what has kept Lizzy with us during the last 3 years.

Yes its been 3 years since Lizzy was air lifted to Melbourne on that crappy Saturday night.

Three years of travelling to and from hospitals, clinics, pathology centres, doctors and of course KFC & JB HI FI.

A double transplant is what our Dear one needs. A liver and a stem cell transplant could help keep Lizzy with us. BUT these two transplants are needy and won't work together. To have a stem cell transplant you need a liver that can process the chemo needed to kill off Lizzy's cells. Cirrhosis of the liver is where healthy cells are replaced by scar tissue. The drugs needed for a liver transplant will progress Lizzy MDS (myelodysplastic syndrome) into cancer and you need a liver healthy enough to process the chemo needed to treat cancer!!!! A vicious circle! Along with Lizzy's other health concerns, including an ASD heart defect, pulmonary value stenosis, portal hypertension, gastric ulcers and living with DS, Lizzy life over the last three years has been bloody tuff.

Tuff is what our Dear one is made off. Tuff is, as a family, we have had to become. Tuff love , tuff talk and tuff stuff is a daily routine is our Life. Sometimes when giving Lizzy a shower, in the bathroom that needs a reno, you would think someone is trying to drown her and its not until you see how wet Dave is you realise how tuff she is and the war was won by her.

The tuff conversation has started about Lizzy transferring to the "adult world" as she will turn 18 in May. The last 3 years we have been soooooo lucky to be surrounded by the Royal Children's Hospital Melbourne and if you have never seen inside this world it is the best, kid friendly, amazing hospital ever. This hospital rates top 5 in the world. As it was three years ago, the unknown of this hospital is now our future with The Peter Mac clinic and the Royal Melbourne's Hospital. In June we return to Melbourne for the usual checkups that include surgery and using "tuff love, tuff words" and hearing some tuff stories in the Cancer Care Unit.

But before we go, May 4th is Lizzy 18th Birthday. I know!!!! Lizzy will be 18. Our Dear one, the one they said would give us love like we would never know will no longer be our baby but will always be out baby.

To make it as special as Lizzy is, Im asking for a favour!

Lizzy loves a balloon. Over the last 3 years, something to always make her smile, has been a delivery of a balloon, or bunch, or a magical balloon from a mystery sender. I'm hoping to fill and tie a balloon or 18 on the front deck that surrounds Lizzy's room and her outlook from her couch.

If you can send a balloon and a little message in the post i'll blow it up on the day.

If you can drop in and tie it on yourself that would be perfect.

Our Family wants to make this day as colourful as Lizzy's life has been.

If you can help please send your balloon to

A Princesses 18th Birthday.

44 Waroona st

Youngtown Launceston

Tas

7249

Love & Kisses