It has been a very long time since I last wrote and since Alice's last photos. So I am sitting down to write an update mainly with the intention of adding in lots of photos!
I have been meaning to write but there is always so much going on. In June I talked at a luncheon for 'Variety the Children's Charity'. Josh and Alice came with me to the lunch and both came up the front so I could introduce them to everyone. Alice was her happy, bubbly self and Josh showed everyone a fantastic picture he had drawn of Callington Mill, a local historical landmark. Everyone clapped for Josh and, his picture now hangs in the Variety office in Hobart. The premier of Tasmania, Mayor and about 60 others from Tasmania and interstate were at the luncheon - so it was very brave of Josh and Alice to stand up in front of them - I was SO proud!!!
I have included an exert from the talk I gave: "Disability is not something that anyone chooses. Disability is not determined by age, race, financial situation, political beliefs or any of the other markers we use to define our world, or our lives in it...
When I was pregnant with my first child, I knew from the very first who he was. And Josh is everything I imagined and more - gorgeous, funny, intelligent and creative.
When I was pregnant with my second child, at first I couldn't work out who she was, but by 6 months I new she was a girl and I new she was coming for a reason. She was coming to teach us something special. I hoped she would be an inspirational artist like Klimt, her father hoped she would be a famous sports woman.
Alice was born beautiful, healthy and strong. My world felt complete. Then at 8 weeks of age Alice had her first seizure. By 25 weeks of age she was having up to 30 seizures a day.
The Neurologist in Melbourne told us "It's like her brain's exploding, I don't know how she's survived this long" then he said "There's nothing we can do to save her - take her home to die".
Instead of telling the whole story (of a very long journey), I will just say that, in her own way, Alice let me know she didn't want me to give up on her, and I promised her I never would.
At about 2 years of age Alice was the 3rd girl in Australia to be diagnosed with a rare genetic condition called CDKL5. Cyclin-Dependent-Kinaise-Like-5 is an X-linked genetic disorder affecting more girls than boys, of no known cause - resulting in life threatening seizures, gastric dysfunction and severe intellectual and physical disability. Many of the children are peg fed (through a hole in their tummy), bed ridden, and regularly in and out of hospital. There are now 7 girls diagnosed with CDKL5 in Australia and about 200 children world wide.
Neither Mike or I are carriers of the condition, we have no family history of severe childhood illness or disability, I ate all the right foods, didn't drink or smoke and kept healthy when pregnant - Alice's illness and disability were totally unexpected, totally unprepared for and totally devastating for our family. I should also mention that we live on a farm outside of Oatlands (Southern Midlands of Tasmania), so Alice's illness and disability has meant the children and I have had to move to Hobart (Capital City) in order to ensure we can access medical care and therapy, while Mike stays at home to keep the farm running.
I have been meaning to write but there is always so much going on. In June I talked at a luncheon for 'Variety the Children's Charity'. Josh and Alice came with me to the lunch and both came up the front so I could introduce them to everyone. Alice was her happy, bubbly self and Josh showed everyone a fantastic picture he had drawn of Callington Mill, a local historical landmark. Everyone clapped for Josh and, his picture now hangs in the Variety office in Hobart. The premier of Tasmania, Mayor and about 60 others from Tasmania and interstate were at the luncheon - so it was very brave of Josh and Alice to stand up in front of them - I was SO proud!!!
I have included an exert from the talk I gave: "Disability is not something that anyone chooses. Disability is not determined by age, race, financial situation, political beliefs or any of the other markers we use to define our world, or our lives in it...
When I was pregnant with my first child, I knew from the very first who he was. And Josh is everything I imagined and more - gorgeous, funny, intelligent and creative.
When I was pregnant with my second child, at first I couldn't work out who she was, but by 6 months I new she was a girl and I new she was coming for a reason. She was coming to teach us something special. I hoped she would be an inspirational artist like Klimt, her father hoped she would be a famous sports woman.
Alice was born beautiful, healthy and strong. My world felt complete. Then at 8 weeks of age Alice had her first seizure. By 25 weeks of age she was having up to 30 seizures a day.
The Neurologist in Melbourne told us "It's like her brain's exploding, I don't know how she's survived this long" then he said "There's nothing we can do to save her - take her home to die".
Instead of telling the whole story (of a very long journey), I will just say that, in her own way, Alice let me know she didn't want me to give up on her, and I promised her I never would.
At about 2 years of age Alice was the 3rd girl in Australia to be diagnosed with a rare genetic condition called CDKL5. Cyclin-Dependent-Kinaise-Like-5 is an X-linked genetic disorder affecting more girls than boys, of no known cause - resulting in life threatening seizures, gastric dysfunction and severe intellectual and physical disability. Many of the children are peg fed (through a hole in their tummy), bed ridden, and regularly in and out of hospital. There are now 7 girls diagnosed with CDKL5 in Australia and about 200 children world wide.
Neither Mike or I are carriers of the condition, we have no family history of severe childhood illness or disability, I ate all the right foods, didn't drink or smoke and kept healthy when pregnant - Alice's illness and disability were totally unexpected, totally unprepared for and totally devastating for our family. I should also mention that we live on a farm outside of Oatlands (Southern Midlands of Tasmania), so Alice's illness and disability has meant the children and I have had to move to Hobart (Capital City) in order to ensure we can access medical care and therapy, while Mike stays at home to keep the farm running.
Life is a roller coaster for all families, but when you have a child who is seriously ill or disabled, the peaks and troughs of that ride are amplified ... Do you remember that feeling you get before the carriage starts its terrifying decent, when your heart stops and leaps into your mouth - that's the feeling I get every time I hear Alice stop breathing, at the start of a seizure.
But, we also have the highs, seeing Alice smiling down at me when I first wake in the morning, her eyes sparkling, and knowing we have another day together. Or when someones generosity makes Alice's life, our life, just a little bit easier.
That's why organisations like Variety are so very special, and so very important to so many people for so many reasons".
There was a little more to the talk but this is the bones of it. I love talking, I could talk under water and I am confident to talk both professionally and as Alice's mum, medically at genetics or biomedical conferences ... but opening my heart to talk about Alice's illness and how it has impacted on our family was really hard, I nearly cried a few times,but at least half the audience had a tear or two as well, so I think I got my message across!
Variety gifted Alice a specially designed body splint to help her learn to stand, and an Ipad to help develop her fine motor and language skills - so we are very grateful for the wonderful work they do.
I am off to another Biomedical conference in Sydney in August so hope to come back with more inspirational information and ideas .... and maybe another update!!!
Variety gifted Alice a specially designed body splint to help her learn to stand, and an Ipad to help develop her fine motor and language skills - so we are very grateful for the wonderful work they do.
I am off to another Biomedical conference in Sydney in August so hope to come back with more inspirational information and ideas .... and maybe another update!!!
Alice is a real sweetie pie! Your blog was sent to me by a friend of mine (Shaelene). Keep writing! :)
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