Charlie’s forever bed

Charlie is a 6 year old boy who was born with t21 and a Avsd heart defect.

At the age of 6 months old Charlie went for his first heart operation which they tried to repair his heart defect but unfortunately it was only half successful. After being in hospital for 3 months then went in for his second operation to repair his heart with a mechanical heart valve. And a permanent pacemaker installed.

At the age of 1 Charlie’s heart function failed again when he had 3 cardiac arrest in 1 day, then went on to echmo as his mechanical valve had a clot in it and was no longer working. He then under went his second heart operation.

Since then Charlie has had an additional 2 open heart operations lasting for about 10-12 hours each one.

Charlie has been ng/machine fed from birth. He has also had multiple chest infection from a very young age which included rsv which caused Charlie to be ventilated.

He has had 10 admissions to PICU.

Unfortunately on this last admission to Bristol Charlie unfortunately lost his battle to and infection/disease that still is not confirmed. Charlie for the last 2 months has spent his time in Bristol PICU. With what we thought was a chest infection. Unfortunately after time went on we realised that it was more than a chest infection. After 2 weeks of him being ventilated we tried to get him off which last a few hours before we realised that he wasn’t coping. So then went back on after another week or so we tried to come off again and on to cpap this lasted for 3 days. Charlie then had sepsis crisis which caused him to go back in to the ventilator. At that point our consultant told us that we had 50% chance of getting through the night. After now 2 months of being ventilated Charlie then had a second major blip when we were told that we need to start stopping treatment for Charlie as his body wasn’t going to get better. So unfortunately we lost our Charlie to multiple organ failure.

Charlie was the most amazing loving brother, grandson, nephew, cousin. Who loves playing with his brother and sisters. The funniest and cheapest boy that you will ever meet. From pulling his machine along the floor to so that he could get to the kitchen sink to take all the metal spoons to lick or to throw our bowls on to the floor. A boy that has a presence where ever he goes and once you meet him you will automatically fall in love with him. He loved his time at school playing with his friends and his teachers that adored him!

Any money left over from giving Charlie the best send off will be going to the family for his siblings xx