F U N D R A I S I N G A D V E N T U R E S
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Maddies Fun Day
17th August 2018
I didn’t have a good start to life. Born on 12th May 2013, I suffered a brain injury during birth due to lack of oxygen, the technical term for my condition is Hypoxic Ischemic Encephalopathy or HIE. When I was born I was very poorly and wasn’t expected to live past a few days . But with lots of support and hope from family and friends, I have come a long way.
My type of damage to my brain means that we do not know what the future holds or how my brain injury will affect my progress in the future.
I have many complex needs, I am registered DeafBlind but make good use of the vision that I have and wear 2 cochlear implants to enable me to hear. Sound doesn't sound the same to you as it does to me but it helps me to be able to access my world better. I have Cerebral Palsy that affects all 4 of my limbs, this means that I am classed as non mobile and need help to move around and get in and out of my wheelchair or standing frame. It also means I have regular spasms that can be very uncomfortable so its important my position is changed regularly.
I have complex epilepsy which can at times be difficult to manage, I am on regular medications for this and a special diet called the Ketogenic diet. This has helped reduce the number and severity of my seizures.
Lastly I am tube fed into a tube called a gastrostomy which goes straight into my tummy.
Mummy and Daddy are always looking at different forms of treatment and equipment to help me and, unfortunately, not all of these can be supplied through the NHS. Also a lot of them cost a lot of money!!
So Mummy and Daddy are always thinking of creative ways to fundraise to afford all the different equipment that could improve my quality of life and help me reach my full potential.