On January 6th 2011 I drove my two children to my parents house. "I love you both" I said with tears starting to well in my eyes. "Why did you say that mum?' Amelia asked concerned. "Because I just want you both to know how much I love you" I said. When I left them 15 minutes later the tears were streaming. Today our lives was going to change permanently forever, I could feel it.
Scott and I walked in to a meeting of 6 doctors and 1 social worker. We were then told what we knew they had already tried to prepare us for. Scott was silent and I couldn't stop talking and asking questions. The previous night I had formulated a list of questions (with a glass of wine!) which I wanted answers to. We were never going to have all of these experts in the same room again. They answered my questions but no response was positive.
The meeting finished an hour later and we left with the knowledge that we had a 7 year old daughter with Ataxia Telangiectasia or A-T.
All the power and energy our family and friends had given us through their support disappeared. We felt very alone. Our daughter had a disease that was eating away at her brain and they just told us there was nothing we could do about it.
Over the next few days my thinking ran in many directions, but I was surprised at how positive some of my thoughts were.
Here we had this genuinely caring and happy little girl. Us. How lucky we were to have created and loved such a beautiful person over the past 7 years. What an honour to have her in our lives. I feel exactly the same way about Tom but his personality and being are different. I am thankful for him in ways that are unique to him.
A new chapter had begun in our lives and I wanted to embrace it so that we could move on, but a major part of embracing that meant I wanted to fight this disease. No parent could sit back and know that their child was losing brain cells. Cells that can never be recovered. Any research, clinical trials or cures were going to happen in the future and be of absolutely no benefit to us. Amelia's brain cells are dying now. I wanted to try and stop that now. I realise that if doctors and scientists cannot find anything to help this disease how would I? But it is still worth a try.
So my fellow facebook friends and I began our research. Hope was creeping back.
Oxidative stress contributes to brain cell death in A-T sufferers. Blueberries kill oxidative stress. One possible thing to help us.....maybe. Many other articles have been found and many suggestions have been made. It is all worth a try.
So as we embark on a new journey, I thank the universe that they gave Amelia to us. It is an honour to be her parents and have the pleasure of being reminded of what is important in life. Fun, love and happiness.
As a family we will fight this disease. We will learn more about it and hopefully delay the downward spiral that is inevitably in front of us.
But most importantly we will go back to being the happy family we always were. We will appreciate every single moment so much more and never take anything for granted ever again.
Scott and I walked in to a meeting of 6 doctors and 1 social worker. We were then told what we knew they had already tried to prepare us for. Scott was silent and I couldn't stop talking and asking questions. The previous night I had formulated a list of questions (with a glass of wine!) which I wanted answers to. We were never going to have all of these experts in the same room again. They answered my questions but no response was positive.
The meeting finished an hour later and we left with the knowledge that we had a 7 year old daughter with Ataxia Telangiectasia or A-T.
All the power and energy our family and friends had given us through their support disappeared. We felt very alone. Our daughter had a disease that was eating away at her brain and they just told us there was nothing we could do about it.
Over the next few days my thinking ran in many directions, but I was surprised at how positive some of my thoughts were.
Here we had this genuinely caring and happy little girl. Us. How lucky we were to have created and loved such a beautiful person over the past 7 years. What an honour to have her in our lives. I feel exactly the same way about Tom but his personality and being are different. I am thankful for him in ways that are unique to him.
A new chapter had begun in our lives and I wanted to embrace it so that we could move on, but a major part of embracing that meant I wanted to fight this disease. No parent could sit back and know that their child was losing brain cells. Cells that can never be recovered. Any research, clinical trials or cures were going to happen in the future and be of absolutely no benefit to us. Amelia's brain cells are dying now. I wanted to try and stop that now. I realise that if doctors and scientists cannot find anything to help this disease how would I? But it is still worth a try.
So my fellow facebook friends and I began our research. Hope was creeping back.
Oxidative stress contributes to brain cell death in A-T sufferers. Blueberries kill oxidative stress. One possible thing to help us.....maybe. Many other articles have been found and many suggestions have been made. It is all worth a try.
So as we embark on a new journey, I thank the universe that they gave Amelia to us. It is an honour to be her parents and have the pleasure of being reminded of what is important in life. Fun, love and happiness.
As a family we will fight this disease. We will learn more about it and hopefully delay the downward spiral that is inevitably in front of us.
But most importantly we will go back to being the happy family we always were. We will appreciate every single moment so much more and never take anything for granted ever again.
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