Joshua Burns Adair
Hi my name is Joshua I was diagnosed with Jeunes Thoracic Dystrophy at birth, I have been to Great Ormond Street for to operations to enlarge my chest as it was very small due to having Jeunse. I will be 5 in june, I have been having problems with my tummy bloating up and it caused me to go in to shock a couple of Saturdays ago and i nearly died but the paramedics got me back. I am a very happy and giddy boy and love life to the full. After having this episode on the Saturday I have been told by the hospital that there isnt anything else that they can help me with as they dont have the resorses in this country. My dad has found a hospital in america that could help me but it costs a lot off money that my mum and dad dont have, so I am asking for everyone out there if they could possibly help so that i can have a chance to live a long life with my loving mum and dad, I would be greatfull for any small donation as it will all count. Thank you for reading my story and I hope in your heart you can help. Love Joshua.
You can also Google joshua's full name and you will get the full story of of his brave journey.
Our little girl Lilah has had genetic testing done were still awaiting the results but they think she has Jeunes Syndrome it's heartbreaking and there is not much information out there to look into are there any support groups out there? May God bless your handsome guy Joshua I pray that your able to raise enough money needed for your target much love and comfort being sent your way
Another hospital in the US: http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/jeune-syndrome/
I play in a Soul & Motown Band )Black & Gold) which is probably the best in the northwest, WE would be willing to put on a show for Joshua. If you are interested please call me on 07961-940976
I really hope you reach your target. As a fellow Jeune patient this struck a very personal chord x