Hi my name is Saul and I was born on the 5th October 2017 with Congenital Central Hypoventilation Syndrome CCHS and Hirschsprung disease. CCHS is really really rare infact I am one of only approx 1200 people diagnosed world wide!
CCHS means that when I go to sleep I don't have the drive to breathe and I need to have a ventilator attached to me. Currently I am ventilated 24/7 but I am hoping that I do not need that in the future and I will just need to be plugged in at night or when I nap.
Unfortunately there is no cure for this syndrome. Don't feel sad for me I have a loving family and hopefully I can still have a good quality of life. My Mummy and Daddy currently both work full time to provide for me and my big brother and sister. Unfortunately potentially both of my parents may have to give up work so they can take special care of me, particulary whilst I am young. This will create a financial pressure for which the government provide little support.
Every donation you make will mean that I will have the best care and equipment to enjoy my life, learn and grow, it will help to keep us together in our family home, allowing the support of the trained carers as well as food on the table.
My Mummy, Daddy, friends and family will promise when we can we will also give something back and pay forward your kindness and plan on doing some fundraising for cots for tots in the future. This special charity has meant that my Mummy and Daddy can live next to me whilst I am on the NICU unit and be there for me when i need them the most.
Thanks for listening and keep checking back in with me for regular updates on my story and progress.
- Kevin Mangell
- Amy Stacey
- Amy-lou Thomas
- dave corbett
- Naomi McGregor-Smith