Alfie's Wish To Walk

Alfie with his friend Casey Hello, i would like to introduce myself to you. My name is Alfie Smith and i am 7 years old from Awsworth in Nottinghamshire. Unfortunately i have inherited a very rare genetic disorder called Gluteric Acidemia type 1. It only occurs in approx 1 in every 40,000 people.

 This means i am unable to process certain proteins in food and if i eat to much protein the excessive levels can accumulate and cause damage to my brain which control movements of my body and balance. My protein is limited to 19g per day. There is 25g of protein in a McDonalds double  cheeseburger so, as you can see, it isnt very much. That is why it is important for my mummy to measure all my food every meal every day.

It can also effect me if i am ill. Something as simple as a common cold can stop me feeling like eating and i will end up in hospital on a drip to stop my body going into a metobolic crisis. I was 18 months old before my mummy and daddy found out so it has already affected my body and it will take a long time for me to get stronger.

Mummy has been taking me to a centre in Flitwick where they are helping me with my co ordination and balance with the help of a very clever suit called a Therma suit. As this is not available on the NHS we have to pay for it ourselves and i go for a week at a time every month. They say i am getting stronger every time i go.

Then in May 2014 i went to London St Thomas hospital for an operation called Deep Brain Stimulation. They had to put wires in my brain and connect it to a battery in my tummy. This is to help stop the involuntary movements i have but it is even more important now that i get as much physiotherapy as possible to increase my strength in my muscles so i can learn to walk.

Mummy and daddy have also been advised about  a clinic in Slovakia called the Adeli Medical Centre. Here, they can offer me intensive neurologic rehabilitation. Unfortunately my parents haven't got enough pennies to send me so that is why we are asking you for your help because one day i would love to hold mummy and daddys hand and walk to school to see my friends and do the things they do.

If we exceed the target amount or if we do not raise enough funds, or if they cannot be used for any other reason, the funds will go to the general funds of Tree of Hope to help other poorly children.

Please can you help my mummy and daddy, and me of course, in anyway you can.


Love Alfie x

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