Charlie's Dreams - A Heart Hero's Journey to Transplant

Edit: I would like to add that we haven't currently had the discussion about transplant with Charlie as we are waiting to see if he will be accepted/eligible for a heart transplant. His understanding at the moment is that his heart needs more help and we have to go to lots of appointments at the moment. We ask that people respect this decision and those that know him do not discuss transplant with him. He also knows i am fundraising to support his dreams. Thank you xx

Hi my name is Liz and I'm Charlie's mum. At 23 weeks pregnant my unborn baby boy was diagnosed with a heart condition called Hypoplastic Left Heart Syndrome (HLHS) also known as half a heart. Myself and my husband James (Charlie's dad) were given 3 options that day; terminate my pregnancy, go full term birth him and allow nature to take its course and let him die or to take a chance and try surgery. Surgery consisted of 3 set stages done at different points in his life and with the probability of a heart transplant being needed at some point. We chose to give him a fighting chance at life. We knew it wouldn't be easy but we knew we couldn't not try.

So at 40 weeks+11 my bundle made his appearance at 4.05pm on Thursday 18th February 2016 weighing 9lb14oz. I didn't get many of those "firsts" that most new mums get but I knew the safety of my baby had to come first. Labour wasn't easy and I ended up having an emergency c section and spent the rest of my time in recovery as I lost an extremely large amount of blood. The day after I finally got to meet my baby in the NICU still unable to hold him but I held his little hand. Later that day he was transferred to Birmingham Children's Hospital with James following behind. I had to stay where I was due to having just had major surgery myself. I managed to join him in Birmingham the day after and we've been inseparable ever since.

Charlie has had 3 open heart surgeries at 4 days old, 5 months old and 4 years old. These were a set 3 stages of surgery to try and help re-plumb Charlie's heart to manage off a single ventricle. All surgeries were hard and as a family we have endured so much. I was also diagnosed with mouth/tongue cancer in October 2016 and underwent huge surgery to remove the tumour and reconstruct. James also has a condition called FND Functional Neurological Disorder which is a condition that has to be managed.

Charlie had his last open heart surgery in November 2020 during the Covid 19 pandemic. This was especially hard living the hospital life when your child is having high risk open heart surgery only one parent allowed at the bed. Myself and James became ships passing in the night to ensure we could give the best support for our son and at times throughout this journey our relationship has suffered because when you have a poorly child your life becomes that child, every thought every situation is about that child.

After the surgeries come the check ups every 6 months being prodded and poked, the cardiac catheters where your child has to be put to sleep for this procedure, the hospital stays, all the other medical field input the dietitians, the community nursing team, play specialists, the paediatric psychologists. You do it all to give your child the best chance in life and to help protect their wellbeing not only physically but mentally too.. Fast forward to now..

Charlie is now 9 years old and has been stable the last few years. Last year however we were given the news that his heart has deteriorated. We have had numerous hospital stays new meds have been started and last November 2024 Charlie was admitted to have a Cardiac Catheter to investigate why his heart is deteriorating. However on the day the procedure was cancelled as it was too high risk for Charlie to have this done due to complications such as stroke, cardiac arrest, needing life support or even death.

The only other option for Charlie now is a heart transplant. So we have now started our transplant journey which has taken us to the Freeman Hospital in Newcastle. This is over 200 miles from us here in Shropshire but we feel with Newcastle and Birmingham hospitals Charlie will have the best possible care.

Transplant is a whole different ball game. You must first be assessed to see if you are eligible for a transplant before you are placed on the transplant list and the reality of transplant is that it might never actually happen. We have so far been to Newcastle for transplant assessment where Charlie has undergone intense tests. We have spoken with the transplant team and they cannot make a decision about transplant until Charlie has had a Cardiac Catheter.. the tests they carry out in a cardiac catheter can determine whether a child needs just a heart transplant or a heart and lung transplant and as I mentioned before the cardiac catheter will be high risk for Charlie. We are currently waiting for a date for this to be done and after this procedure we will then find out of Charlie is eligible to be placed on the heart transplant list..

If he does this could mean huge change for our family it could mean we need to up route our lives here and move..the costs associated with travel and accommodation for hospital trips and generally hospital life is crippling at times and we have struggled financially as a family.

We want to make some of Charlie's dreams come true and this brings me to why I have decided to start this go fund me. It's a dream of Charlie's to go on a plane but he has never been allowed to fly and also because of the complexity of his heart condition should he require medical care outside of the UK it could complicate things further... as a family we love exploring so I would love to raise as much money as possible to fund Charlie's opportunities to explore the UK because this little island has so much to offer..

We would love to buy a reliable preloved Camper van for us to explore without the costs of hotels etc.. we love to get in a car and see where the road takes us but this can be limited when you have to consider hotel costs etc. A van for us and our dog Max would open up a world of opportunity for Charlie and us as a family.. it would also help cut down hotel costs when we have to make the journeys to Newcastle hospital for assessments we can make it more of an adventure for Charlie especially as he struggles within a hospital environment.

We would also love to raise money to buy Charlie a wheelchair that is better suited to all terrain as we spend a lot of time at the coast or in the woods or exploring the countryside and this again would give Charlie opportunities most of us take for granted. I have started our goal as £6000 however this may only just get us started so would love to keep this fundraising live so we can continue to keep raising money for this boy who may only have half a heart but has so much love and kindness to give. If I could give him my own heart I would.

Now I'm nearly 9 years cancer free I want to set myself a challenge so I'm pledging to walk 100 miles in May to raise money for Charlie's dreams and would love to welcome any support in any form whether it in the form of money, messages of support, walking partners or hugs.

If you've read this far thank you