Hi everyone, we are fundraising for Ronald McDonald house charities to say thank you for everything they did for us through Gracie’s transplant journey.

When this all happened, and Gracie was first diagnosed, obviously this was a huge shock, mentally and emotionally our whole families found it very tough. Its one of them things you see or hear about but never think you will be in that situation, and it was literally a living nightmare.

What this charity does is so important because at a time in your life when your going through having a very sick child you just don’t have the capacity to deal with things like finances or accommodation because all you can think about is if your baby is going to be okay or not and for us, it really was a situation of we didn’t know, we didn’t know if she was going to be okay at the end of this and honestly that just takes up all of your brain space.

For most people, because these things happen unexpectedly you don’t have the financial ability to fund this either.

We are fundraising in the run up to Gracie's 1 year post transplant date and we would love if you could help us raise our target. It costs £35 per night to house a family and we want to help as many people as we can.

Here's our story and why we want to help.

Gracie was diagnosed with Billiary Atresia when she was 8 weeks old. It’s a rare and incurable liver disease that traps bile in the liver and essentially burns it inside out, and at 9 weeks old she had major surgery (the Kasai procedure) to try to buy her some more time with her broken liver. She was given a maximum life expectancy of 2 without treatment and we were told there was a 50/50 chance of the Kasai working. We soon found out that the Kasai had failed and that Gracie now needed a life saving liver transplant.

She was listed for transplant in July 2022 and although her liver disease was progressing, her tiny frail body was malnourished and weak, she itched constantly from the billarubin in her skin, she went yellow and more yellow, her hair changed colour her eyes looked smoke damaged, her tummy and pelvis filled with fluid because her liver stopped making the proteins to break it down and allowing her to absorb fat, she was force fed through an NG tube just to keep her hydrated and alive, despite all of this- she smiled every day, she was so brave and strong and incredible.

In October we received news from the hospital that the liver disease had progressed much quicker than we thought it would and any day now she could deteriorate really quickly so we were praying for a match to come through. A few weeks later (after many tests) we received the amazing news that I was a match for living donation and we had the next available date of 16th December booked! This was cancelled due to no bed space in intensive care the morning of the surgery and was a real knock back but was rescheduled for 13th January 2023 and although it was a gruelling few weeks, we spent Gracie’s first Christmas at home with our son Jack too.

The 13th January came and went ahead as planned. 20% of my liver was taken and given to Gracie which will grow with her into a fully functioning full size liver… and the piece I’m missing, grew back, in 7 weeks!

My recovery wasn’t great. I had my ribs retracted so they could get to the liver and the pain from this made it hard to breathe so I had a morphine drip which took the edge off. We didn’t know that I have an extreme sensitivity to morphine so despite me only having the recommended dose for my size on the 14th January I was found by a doctor unresponsive and opioid intoxicated. I received 3 minutes of CPR, painful stimulation, and given naloxine to reverse the effect of the morphine and I came round before the defib was used. The CPR crushed my ribs and there was concern that CPR may have caused damage to the liver site so I went back to intensive care for another 3 days. Jake received a call late at night to tell him what had happened and he rushed to me.

Gracie spent the first few days in intensive care she was in a lot of pain Jake was with her every minute he could be and held her tiny hands as she called out for him. She pulled her breathing tube out herself the same night that I had a was found unresponsive so Jake had 24 hours of pure hell.

But, Gracie got stronger and healthier every minute, she was moved from intensive care to the ward and was discharged after just 13 days! She made a phenomenally quick recovery and absolutely smashed it! She had a setback just after discharge when she contracted sepsis (which was so scary) but after a few more days in the hospital she was back to it in no time! Within a few days her skin changed colour, her hair and her eyes looked different and she started to resemble a normal baby, still so tiny but so much healthier looking.

I want to tell you a bit about why we want to support RMHC and what specifically they did for us throughout Gracie’s transplant journey.

We first used the Camberwell Ronald McDonald house in March 2022 when Gracie underwent her first operation at 9 weeks and 1 day old. I was able to stay on the ward with Gracie but only one parent could stay so it would have meant Jake having to commute each day. The relief when they told us Jake had a room was phenomenal because we could just focus on Gracie and her recovery.

Without that we would have had to consider parking costs, ULEZ charges, hotel costs or train fare/ train strikes, at a time when neither of us could work. We still had bills to pay at home, and we were living out of Costa and M&S as they were the only shops in the hospital. It would have very quickly become very unaffordable. We looked at hotels, even air BNBs but to park at near the hospital alone is criminally expensive so you can imagine what hotel prices are like!

Having a room at RMHC meant that for the days after her surgery and her recovery Jake was just a 5 minute walk away and could come every morning by 6.30 and stay till pretty much midnight. It meant I didn’t have to sit alone whilst trying to comfort her when she was crying in pain. She was so tiny that she couldn’t have much pain relief so the first 48 hours of recovery were savage to watch.

But I didn’t have to be by myself when she had the dozens of procedures, bloods tests, sugar level checks, injections, dressing changes. No one want to see their baby go through pain and no one was to be alone when they have to.

In the most heart breaking moments of our lives Jake and I were able to be there for each other and hold hands and do it together and that was made so much easier by RMHC giving us a place to stay.

It also meant that we could give each respite, Jake was able to bring me food and coffee because the hospitals don’t have to feed parents and there was no way I was leaving her side to go and get a sandwich.

The second time we used the RMHC was for Gracie’s transplant, I was obviously staying in hospital too at this time but in intensive care, there is no bed for parents so without the RMHC room for Jake he would have had no where to stay.

We were also very lucky to have Jakes mum stay with us during this time to be there for Gracie when Jake needed to be with me so when Grace was moved back to a ward and Jake was able to stay on the ward with her, Jakes mum continued to stay at the RMH so that she could continue to provide us with the support that we needed.

The night that I was found unresponsive, they called Jake and he literally ran from the house to me, and was with me within minutes. Imagine getting that phone call, then having to look for the next train, or even drive in that state. Families need to be near their loved ones in hospital and that is why I will forever be grateful for what they did for us.

They provide laundry facilities so we could wash and dry clothes, which is absolutely essential when your far away from home.

The ward that Gracie was on was no siblings allowed for infection control, which meant Jake had not seen our son Jack for a long time. But thanks to RMHC we were able to take our son Jack up to see his Daddy for the first time in weeks and they were able spend the day in the RMH together, they have a big games room and a garden and they made a big fuss of Jack and sent him away with a goodie bag too!

They have a fully functioning kitchen, and always had breakfast available too.

What this charity does is amazing, and I wish that no parent ever has to go through this but the sad reality is that they do. I want to help and support them as much as we can so they can keep providing the incredible facilities that they do. If you can, please donate, and if you can’t then please share this to your friends and family to help us spread the word.

Thank you so much

Rae & Jake

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