UPDATE: Although we have now hit our initial goal and are extremely proud, the initial target that was set was never to put a limit on how much we could raise. It was just what we thought was possible. We have exceeded the target and want to carry on as every penny will still go towards the unit and towards helping critically ill children. Thank you.

As a lot of close friends and family already know, Lauren and I recently spent a long while in hospital with our daughter Maya. She has Dilated Cardiomyopathy, that is a heart condition that enlarges and weakens the heart and affects its ability to pump blood around the body. It is a very serious condition that Lauren also has, and it is the reason that Lauren lost her mum and twin sister when she was very young.

We had quite a rough pregnancy with Lauren’s heart function and symptoms worsening along with regular hospital admissions due to reduced movements. This meant that Maya was born 4 weeks early by C section.

Maya was absolutely perfect when she was born and was the most beautiful baby girl in the world. We were sent home after 6 days due to monitoring for Lauren. Maya had bloods taken to be sent for genetic testing along with an ECG for precaution.

Weeks later Maya started to refuse bottles and was overly sleepy. We took her to our GP and we were told she had thrush and sent home with tongue drops. In this time we had received a phone call from the geneticist telling us that she had tested positive for the MYH7 gene mutation that is so strong in the family. This did not mean that she necessarily had the condition but just that she was a gene carrier.

A few days after we noticed that Maya was tugging at her neck and recessing around her ribs whilst breathing, we took her straight to our nearest A&E and explained the family history, and that she had tested positive for the gene. We were seen after 6 hours and told that it was most likely a viral infection but due to our concern around the condition that they could do precautionary checks. From this point we were then waiting over 36 hours and were given an echo, where she was diagnosed with Dilated Cardiomyopathy. From this we were told that they cannot treat her as they would have to take the advice of specialists from Royal Manchester children’s hospital, but could not send us there as there were no bed spaces.

It was painful enough to know that our daughter had been fighting for her life so strongly without us knowing, but to now know, and be refused treatment, we felt was terrible. Lauren’s mothering instincts kicked in and she rang RMCH herself and pleaded for their help as we felt trapped and helpless where we were. From this moment we were transferred in an ambulance and taken into Paediatric intensive care.

In here we had some of the worst conversations that I’ve ever had to face and I hope that we never feel the way that we did again. We were told how lucky we were that we had brought her in at the time we did and that because of her high unstable heart rate, that she could go into a cardiac arrest at any point. It was traumatising things to feel and we had to face it and be strong for her.

She was too small for a heart transplant and was put on an IV medication called milrinone. After a long few days the critical care team decided that although she was still extremely poorly, she did not need to be on the intensive care unit, and we were moved into their other ward, the high dependency unit.

Being in critical care was extremely intense and every day is physically draining. There were extreme lows and some highs if we were very lucky. We spent 6 weeks in HDU including our first Christmas and new year with our baby. We can’t imagine a worse situation to have been in for our first Christmas and yet throughout this the Critical care staff managed to make it so magical and emotional. It is something that will stay with us forever and seeing their high spirits in such a sad time helped so much.

As she got bigger we were told that if she did not improve that she could need a heart transplant. This was our biggest fear as Lauren has had first hand experience with how a heart transplant can not always work, due to the loss of her sister.

Some days were shocking and there is no true way to explain how we felt. Whether it was watching her go for surgery, or days where she wouldn’t wake up the staff were always there by our side and helping in every way they could.

Going into further detail about the experiences that we have faced is not necessary but, the good news is that Maya is so strong and we have been home for a few weeks now with lots of medication. We couldn’t be prouder of her. She will be on the heart transplant list for life as there will always be the risk of deterioration again.

Although our daughter is extremely strong, we were not always. This is why we feel as though it is so important to raise some money for the critical care unit. Without this team I do not know where we would be. Words can’t describe how amazing they are, every individual member of staff is absolutely out of this world. Mayas care was outstanding and we will never forget the lengths that the staff were willing to go to make every day special for her and us. With meeting other families and patients in the unit we know that this team treat every patient and family this way.

We were in hospital for a total of 8 weeks. While this is much longer than most, there are also a lot of patients admitted for a lot longer than this, and having met some of the families that have been in for a similar, or longer length of time than us, we know that the critical care team are as important to keeping them positive as they were to us. Any kind of donation will help massively as the money will go towards helping the team do what they do best.

Depending on how much is raised, the money can go towards life-saving equipment, sensory resources to support patient wellbeing, and research to improve care for critically ill children. This means that an already outstanding group of people can go just that little bit further.

We are doing this in honour of Maya, however this is not raising money for her. The money is for every child that becomes critically ill. Anyone can end up in critical care, there are hundreds of reasons for admission and I’m sure that people who read this will know someone who has spent time in critical care, which is why it is so important to share and give people a chance to donate for themselves.

We are going to be doing multiple fundraising activities from things like sponsored walks, fundraising days, and everything in between. If anyone is wanting to do more than donate, and wants to be involved in the fundraising then contact us and we can help set something up with this cause in mind. We want to raise, and do as much as possible.

This team is remarkable and we are desperate to give back to them in the only way that we feel as though we can. Please donate, any amount will go such a long way. We have the chance to do something really special, for a team that did something really special for us.

This fundraiser is a symbol of Maya’s strength, and in memory of Louise Snape and Katie Williams. Maya’s nana and auntie who she will never be able to meet due to this tragic condition. Please share and donate. Thank you so much.