/ Athetoid Cerebral Palsy With Low Tone Developmental Delay Epilepsy And Involuntary Movements Of The Arms And Legs

Marathon for Connor

On Sunday, Andrew Telley, Andrew Cocker and myself will be running in our first marathon.

Seriously? Oh crap. I should practice or something.

Anyhow, as is traditional in these matters, we’re raising money for a worthy cause. As is less traditional, we’re targeting a specific human in need of support: the son of a very good friend of ours. This means a direct money transfer (details below), and no nifty charts showing who’s donated more and such. To make you feel better about this I have included a chart below, however it sadly bears no relation to any data.

And now, a word from Connor

Hi, my name is Connor Bailey.

I am 10 years old and my birth date is the 10th of April, 2002.

My mum’s name is Liz and my dad’s name is Stephen. I have a cool, big sister, Claire, who is in year 7.

I have been diagnosed with athetoid cerebral palsy with low tone, developmental delay, epilepsy and involuntary movements of the arms and legs. I am fed by a gastrostomy tube, with Nutrini, which I am told, is a bit like a chocolate milkshake. But I really enjoy tasting lots of different foods, so at school I love having vegemite biscuits for morning tea.

Until I was 5, I attended Villa Maria’s Early Childhood Intervention Service and met lots of great people who I still see a lot of. I am lucky enough to now go to two schools, St. Paul’s College and Kew East Primary. I am also lucky to have Cristina in my life. She helps mum and dad around the house and looks after me sometimes. She sometimes picks me up from school and walks me home.

I catch the school bus and sometimes a taxi. Dad can fit my wheel chair in his van too.

I go for a sleep-over at Studley respite centre 2 nights a week and sometimes on weekends.

I really like to be around my friends, and I am always happy to meet new people and have a good laugh.

I like to explore new and familiar things using my hands and my mouth. I sometimes wear sweatbands on my wrists, or a bib, to help me to wipe away any extra saliva.

I am currently entitled to a range of financial support, which go towards paying for my care and equipment.

Once I turn 18, this funding will diminish. I will have support from a carer from 9am to 3pm each day but my mum has worked out that I will need $250,000 each year, to pay for a carer beyond these hours.

The raising of these additional funds is called my Future Fund. If you would like to help, you can make a donation via:

Branch: Bendigo Bank, Kew
Account name: C J Bailey
BSB number: 633-000
Account number: 145808499
Transaction description: “Marathon”