Amelia has Ataxia Telengiectasia.
It is degenerative which means it progressively gets worse.
The main signs are the loss of motor skills and speech.
Motor skills covers many areas:
chewing, swallowing, walking, balancing, co-ordination, talking, laughing, hand movement, eyesight, dressing, toileting, feeding...... putting one foot in front of the other.
Why do I mention this again?
Amelia has just turned 9 years old four days ago.
She has had two MAJOR falls this week.
One that should have taken out her front teeth or at least broken an arm.
Yesterday our family made a rule.
Scott, Tom, Amelia and I discussed that Amelia is no longer allowed to walk anywhere unsupervised.
Amelia was the one who asked for it.
This was after the second major fall and she screamed at me through her tears "why did you leave me alone?".
I will take the blame.
I did leave her alone.
Last week I left her alone to walk on numerous occasions and there were no falls.
This week something has changed.
Is it tiredness ?
I have been exceptionally tired this week.
I hope so.
Or is Amelia just closer to losing her motor skills forever ?
I know that many people all over the world read this blog everyday.
I see the audience statistics.
I see the countries where someone has read my entries.
Can we all help make a difference to this horrible genetic disease ?
Research is finding answers and creating more questions.
Answers and questions that may lead towards a cure or treatment to improve quality of life.
This blog keeps everyone informed of Amelia's progress (decline) and also Tom's and mine.
(I do not feel it is my right to discuss Scott's thoughts).
We live and watch this everyday.
Yesterday after the second fall, Tom was extremely shaken and upset.
As well as directing awareness to A-T, I would also like to take this opportunity to provide links to the many organisations working tirelessly to help us.
They were all set up by families just like mine.
A few dollars towards these organisations goes a very long way.
Maybe one day I will surprise you with the news that they have found something.
Something to not only have Amelia walking again, but to also save her life..........
In the UK: