On the way to have a CT scan.
Risk, I'm making a call on.
People with #AtaxiaTelangiectasia are very sensitive to radiation.
When I look back at all the x-rays he had done unnecessary before, I know that he got worse nearly immediately after.
Imagine making calls like that💔

I am a carer.
My son has #AtaxiaTelangiectasia
It affects all muscles in the body. Leads to the inability to walk, talk and use fine motor skills because of the neurological impairment.
I get paid €118 a week. If something happens to him💔
I will be told: Farewell.
#carersweek

I am a carer of a boy, with #AtaxiaTelangiectasia.
I help him wash, dress up, carry him on my back down the stairs.
Go to appointments for/with him.
Speak to DRs
It's my job to know what vaccines he had and when. His medical history since birth.
I'm also him mum.
#CarersWeek

His walking is really bad now. He gets a lot of tremors.
His eyes are slow to move
but somehow
...when it comes to Karte, he is able to stabilize his body and do his katas in the right order.
Got his brown belt today.
I'm bawling my eyes.
And I'm so proud...

#ataxiaTelangiectasia

This time last year my world had fallen apart. Whatever hope I tried holding onto vanished when a diagnosis of #AtaxiaTelangiectasia has been confirmed.
“Children with AT are usually wheelchair-bound by 10, struggling to breathe at 15, and likely to die of cancer by the age of 25".

Today is a Rare Disease Day.
My son's day.

https://www.gofundme.com/f/happy-life-against-all-odds

My goal is still the same...
To get him to the Australian trial somehow... anyhow...

#RareDiseaseDay #ATaxiaTelangiectasia