On Sunday April 28th 2013 I will be taking to the skies for a 10,000 ft skydive in honour of my miracle baby John-Paul who will turn 2 years old on May 3rd. John-Paul was born with a rare chromosome disorder called 1p36 Deletion Syndrome which means he is unable to walk, talk, has epilepsy, is partially sighted, profoundly deaf and has a terminal heart condition.
I am terrified of heights but have been so inspired by my son's fight for survival and all he has to go through that I thought I could get over it and raise some money for some charities that help him the most. The money I raise will be split between 3 great charities which I've detailed for you below. So please - dig deep!
Birmingham Children's Hospital (Neonatal Cardiac Unit) - This is where John-Paul (or Mr J-P) spent the first 9 months of his life after Cardiac surgery. John-Paul now has a very rare and terminal heart condition and the unit continues to manage his condition and support us. Without this team and his lead Cardiac Consultant, Asish Chickermane, John-Paul would not have made it this far. I am forever in their debt.
Acorn's Children's Hospice - John-Paul spends a day here once a month. He is able to use the sensory room which is full of toys specifically tailored to help children like John-Paul with hearing and sight difficulties get the most out of playtime. Mr J-P also uses their swimming pool and this has strengthened his core muscles amazingly. Thanks to this input he is now able to sit up, which Neuorologists told me he would never do.
The 1p36 Family UK & Ireland - This family is my lifeline. I get all the help, support and medical advice from other parent's who live with the same issues day in and day out. Once a year we get the opportunity to meet up at the annual conference. Hosted in a different place each year by a 1p36 Mum, the children get to meet each other and experience special needs activities in that area, and us parents get to meet eachother. We really are one big family