Our Families

Team Green

Description

I have heard some people describe me as a miracle. But it depends on what your definition of a miracle is. My story is unbelievable, but it is my reality, it is my life.

My name is Keeley and I was born 5 years ago with an extremely rare neurological condition called Hemimegalencephaly that caused the left hemisphere of my brain to grossly malform and overgrow. This resulted in me having 100’s of seizures a day. Doctors told my Mum and Dad that I would probably not survive and even if I did my prognosis would be very poor – I would have no quality of life at all. When I was 13 months old I was wheeled into an operating theatre to undergo a radical 17 hour procedure in which a very nervous surgeon removed the entire left half of my brain in an attempt to control the seizures that were risking my life and halting my development.

So I now have half a brain to do what it would ordinarily take a whole brain to do. I have many challenges – I am partially paralysed down the right side of my body and my Mum pushes me in a wheelchair to get around, I find it very hard to speak, I have no vision in my right eye and only the left visual field in my left eye, I cannot eat and have to be fed by a tube in my stomach. But, I have learnt to communicate using a combination of sign language, gestures and the words that I say, I am trying to learn to write, I can spell my name using laminated letters and I can understand everything that you say to me. I have a really wicked sense of humour and love playing tricks on people. I can sit all by myself, I am learning to stand and this year I am working really hard on learning how to walk. Amazing, right? A miracle? To me, I am just me.

I am just a 5 year old girl who loves life. I love to laugh, I love to dance, I love listening to music. I have a little brother who I think is funny and annoying all at once, I love my family and being the centre of attention. I go to concerts, I go to the zoo, I go to school – which might I add I really enjoy. I just love to learn. I am smart, but almost always underestimated. I admit that I have to try extra hard to do the simplest of things and that I wake some days to the biggest of challenges, but I am determined and I will keep fighting – because I love my life.

I live in Bundaberg and travel with my Mum and Brother to Brisbane every fortnight for 4 days to go to Therapy with my friend and therapist Dora Petki. She is helping me learn about my body and how it functions and how I can make it work. I am getting stronger every day. This year I want to learn to move around independently. I am getting tired of sitting in the same old spot all day. I am getting tired of relying on my Mum or Dad to carry me around or push me in my wheelchair. So that is my goal for this year. To be able to move around somehow. I don’t really care how, whether I walk or crawl or bottom shuffle just as long as I can do it on my own. That is my dream and it is waiting for me – somewhere over the rainbow …….. I have the strength and determination to do it, all I need now is some help to fill the Pot of Gold at the end.

How you can help me to reach my dreams

• Donate

• Send this page to your family and friends asking them to donate

• Join my family’s team by walking on the day, seeking sponsorships using the manual book

• Volunteer your time to help my family with respite, chores or day to day tasks

For more information on helping or if you have a question for my family please email supportkeeley@bigpond.com