Hello my name is Myles Jay Beale, I was born to Alf Beale and Lisa Gordon on 24th April 2014. I have a big brother named Shaun and a big sister named Xylia.
I was born with two conditions one named Arthrogryposis which means contractures in the bones causing a deformity with my limbs and the other named Polymicrogyria, meaning the nerves on the brain hadn't connected to send the messages through my body to suck and swallow.
Since birth I have aspirated a few times but lucky I have been in good hands of medical professionals. I live dependently on a feeding machine as I am fed by tube 20hrs a day to stop my hunger pains. I also have a suctiin machine that i depend on to suctiin all the sscretiins that I cannot swallow. I have had two operations where the surgeons cut my Achilles to loosen my feet and put them in place. When i have a growth spurt the specialist puts my legs in cast and am constantly wearing splints.
Despite all the high complex needs, I am one of the lucky ones that have such a loving and caring family that has been there for me since day one.
In return to my loving family i am
Seeking your assistance to help raise funds for our family to attend the 11th Annual Arthrogryposis Conference held in Tulsa, Oklahoma, United States of America, 7th July - 10th July 2016.
This will give us the oppotunity to learn more about my condition and meet other community members that have been diagnosed with this condition.
This will also give us an opportunity to meet and greet some of the best surgeons and specialists that deal with his condition from around the world but also an opportunity for my family to spend some time away together being the first since Iwas born.
I could go on with more, however time is crucial as I strongly would love to send my family to the States.
Therefore, I kindly ask for a donation may that be big or small and I promise to keep you all posted with our trip.
Love to you all.....Myles xox