Today was a BIG day in many ways.
Below I have just written about our life changing experience at Melbourne Zoo but we also began with a visit to The Royal Childrens Hospital.
After a "check-up" with Amelia's paediatrician we had our first appointment with Genetics. The doctor caring for Amelia there spent time with us during our hospital visit in December. He also headed the meeting on January 6th when Ataxia Telengiectasia was confirmed.
Today he was lovely.
He mentioned that he had begun researching A-T and had spoken to Richard Gatti in America about Amelia. Now that he knows about Brashat he will also be speaking to them.
But during his explanation of the discussion with Richard he mentioned there being a number of trials over the next few years. As he spoke the element of HOPE started creeping back into my thinking. Whenever I talk to Krissy at Brashat there is alot of hope for a cure but I was starting to feel there was also hope coming from someone else very far away. That may be 2 more people than 10 weeks ago.
To stop my thoughts from taking over I asked him if my 1% feeling of hope may be valid.
His response : It would be ok to be reasonably optimistic.
Those words are now engraved on my brain.
He explained that if they do find something to help A-T, they cannot get back what has already been lost, but there is a chance they may be able to stop the progression or at least delay it.
Now my thoughts were having a fireworks display in my head.
I didn't know how to react but I knew this comment of hope made me want to jump around like a lunatic.
If we were given the chance to keep Amelia, no matter how far the disease had progressed.....well you cannot possibly put that into words.
So when we go to our first A-T clinic here in Australin in 3 weeks time I am very interested to learn about what "walls have been smashed down" to get closer to that crystal ball cure in the middle.
Oh and I almost forgot.........
Tom has been given the all clear.
Tom DOES NOT have A-T !
Below I have just written about our life changing experience at Melbourne Zoo but we also began with a visit to The Royal Childrens Hospital.
After a "check-up" with Amelia's paediatrician we had our first appointment with Genetics. The doctor caring for Amelia there spent time with us during our hospital visit in December. He also headed the meeting on January 6th when Ataxia Telengiectasia was confirmed.
Today he was lovely.
He mentioned that he had begun researching A-T and had spoken to Richard Gatti in America about Amelia. Now that he knows about Brashat he will also be speaking to them.
But during his explanation of the discussion with Richard he mentioned there being a number of trials over the next few years. As he spoke the element of HOPE started creeping back into my thinking. Whenever I talk to Krissy at Brashat there is alot of hope for a cure but I was starting to feel there was also hope coming from someone else very far away. That may be 2 more people than 10 weeks ago.
To stop my thoughts from taking over I asked him if my 1% feeling of hope may be valid.
His response : It would be ok to be reasonably optimistic.
Those words are now engraved on my brain.
He explained that if they do find something to help A-T, they cannot get back what has already been lost, but there is a chance they may be able to stop the progression or at least delay it.
Now my thoughts were having a fireworks display in my head.
I didn't know how to react but I knew this comment of hope made me want to jump around like a lunatic.
If we were given the chance to keep Amelia, no matter how far the disease had progressed.....well you cannot possibly put that into words.
So when we go to our first A-T clinic here in Australin in 3 weeks time I am very interested to learn about what "walls have been smashed down" to get closer to that crystal ball cure in the middle.
Oh and I almost forgot.........
Tom has been given the all clear.
Tom DOES NOT have A-T !
No comments:
Post a Comment