Hi Everyone! Myself (Clare) and Damien would like to welcome you to our fundraising page and tell you a bit about why we are doing this challenge and where the monies raised will go!
So some of you may know our son Phoenix was born with a condition called Hypoplastic left heart syndrome or also known as “half a heart”. It is a congenital heart disease which effects 1 in 5000 babies each year. Phoenix had his first open heart surgery at just 4 days old which was the first of 3 planned surgeries. The surgery went well but unfortunately the next morning Phoenix suffered a heart attack. He had to be put onto a life support machine for 2 days to let his heart recover which it did and he continued to amaze us with how strong he was, but 2 weeks later we then got the devastating news that Phoenix had also suffered a significant stroke to the left side of his brain. The consultants couldn't tell us how this would affect him as his brain is still growing. We were in the intensive care unit for 4 weeks in total and spent 2 weeks on the cardiac ward and then we got to take our boy home!!
We had 5 amazing weeks with Phoenix at home until he went for a routine scan where they picked up that he had Coarctation of the Aorta or narrowing of his Aorta which needed surgery to correct. We were admitted back to Bristol Childrens hospital on the 2nd November 2017.
After 2 cardiac catheter procedures Phoenix was then booked into have his Glenn (second stage of the three planned open heart surgeries) he had this on the 11th December 2017. Phoenix had a tough time in theatre and had to have a double bypass as he struggled coming off of it the 1st time, but he did it and he came out looking very puffy but amazed us that he was awake!!
During the next few days Phoenix struggled to keep his SATS up and it was discovered that the artery leading to his left lung was so narrow that he wasn't getting enough oxygen to it so they decided upon a 3rd open heart surgery to put a shunt in to increase the blood flow. Yet again Phoenix came out of the surgery like the true fighter he is and has just gone from strength to strength. We are still in hospital but on the road to recovery and we cant wait to take our boy home!!
We have chosen to raise the money for “The Grand Appeal at Bristol Children’s Hospital” because they have been absolutely amazing and they have given our son the gift of life! The staff here have kept us positive even on our darkest days and we just cant thank them enough! but we CAN get on our bikes and raise money for an amazing cause!