Chance for Chelsea to Live the Life she Deserves

Opa’s Story

An Opa’s story.

Sandy and I were super excited to learn that Mel and Trent would be parents and we would become Grand Parents for the first time. This is what we dreamt and hoped about. Then we learnt that Sandy’s daughter Amy was also expecting Hannah 5 weeks later. Excellent! Double the excitement!

When Chelsea was born, we were all so excited. Then along comes Hannah. Just perfect… 2 beautiful little girls.

When Chelsea had her first infantile spasms we had no idea what was going on or what it all meant.

I went with Mel to the Ophthalmologist appointment when they finally diagnosed Aicardi Syndrome. It was only the second case the Doctor had seen. The nurse looked up Aicardi Syndrome in her massive medical book and found it on the very last page. What could that mean???

I stood there holding back the tears, trying to be strong for my own daughter. In reality, Mel turns out to be much stronger than me.

The big mistake I made was Googling Aicardi Syndrome. Big, big mistake! Everything I found was bad news… Prognosis, lifespan, quality of life??? It seemed like our world was turned upside down. How could our beautiful Chelsea have such a thing?

In some ways, I found it doubly hard. I was worrying about my daughter and for Chelsea.

The one big thing I have found in this journey is that the only thing that matters is family! Chelsea is family and we love her with our whole heart.

We have had 2 great years with Chelsea and I know that with Mel and Trent as parents she will be given every chance of a full life.

I have made a few observations since Chelsea was born…
– Chelsea is not disabled. She just has special needs!
– If we meet someone who doesn’t know about Chelsea’s special needs, they don’t have to know everything! Those in the family and her circle of friends know all about Chelsea and we all love her.
– I find great joy in the smallest events now. Recently when we were sitting in a Coffee shop, Chelsea let out a very loud screech. People looked over, but I don’t care. Screech away Chels! Make as much noise as you like!
– When I get Chelsea to give me a High 5, my heart is bursting with love!
– I am continually surprised at the generosity of complete strangers. It does restore your faith in humanity to see people give so generously and freely of their time and donations towards Chelsea.

No matter what the future may hold, all that matters is that Chelsea is happy!

Love always Opa…



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