“The Charity holds a special place in my heart”: Lillie and Harry’s story

In November 2018, mum Vicky, from East Sussex, experienced an ‘emotional whirlwind’ when her daughter Lillie, who was six years old at the time, started to experience constant headaches and blurred vision. After visiting the local opticians, they immediately referred her to hospital for an MRI scan, revealing Lillie had a benign brain tumour, the size of a satsuma.

Then in 2022, Vicky became pregnant with her fourth child and during her 20-week scan she was told that her baby boy Harry would be born with a rare medical condition known as VACTERL. Doctors told Vicky that there could be many complications after Harry’s birth, leaving her in a state of worry and uncertainty.

Thankfully, Ronald McDonald House Charities UK was able to be there for Vicky and her family during both times when her children sadly needed specialist hospital treatments.

My daughter Lillie started to suffer from bad migraines and struggled with her vision back in 2018 and after visiting the doctor, we were told to keep an eye on her. As Lillie was still suffering with her headaches we went to the local optician, who noticed something usual during the eye test. Immediately, Lillie was referred to our local hospital where they investigated further, leading to a transfer to Eastbourne Hospital for an MRI scan, and then the same night an ambulance transfer to King’s College Hospital, London – it was such an emotional whirlwind.

Liaising with the doctors at King’s College Hospital, I had been told that they had found ‘something’, but that’s all the information I was given. The following day after many medical tests, I was given the news that Lillie had a large brain tumour, but they would not know how serious it was until they operated.

Lillie, only being six at the time, had brain surgery to remove the tumour. The procedure was successful, they removed the whole mass, and they were able to confirm that the tumour was benign and not cancerous. Once it was removed, I was told that my little girl had had a brain tumour equivalent to the size of a satsuma in her head! After her recovery, we were able to go home together to be a family again.

On 4 December 2018, Lillie woke up one morning and noticed a wet patch on her shoulder where her head had been leaking fluid following the operation. We ended up back at King’s College Hospital due to Lillie developing an infection in the back of her head.

It wasn’t long into our hospital stay that we were told about the nearby accommodation provided by Ronald McDonald House Charities UK. I had never heard of the Charity before or what they do, but when I was given a bedroom at the Ronald McDonald House Camberwell, I just couldn’t believe that this amazing place existed to help families like mine, allowing me to be close to my child in hospital, day and night.

Even though I was finding it all extremely hard at the time, especially being away from my other children, Oliver and Luke, the staff were simply incredible and empathetic. They went above and beyond for me during the week I stayed and without their support, I honestly don’t know how I would have coped.

Six years later, Lillie is now a thriving 12-year-old and is doing amazingly without any further complications after the tumour. The only after effect is Lilllie’s vision, meaning she now must wear glasses, which thankfully she has always wanted to wear with them being in fashion now!

Jumping ahead to 2022, I became pregnant with my fourth child, Harry and during my 20-week scan I was informed that he had a rare medical condition known as VACTERL. I didn’t know what to expect. I was told so many different things that could be wrong when he was to be born. They said he might not be born breathing, he might not cry or be able to be placed on me when he was born, he could have extra limbs or be born with limbs missing. It was so scary to think about.

My mum sadly died just a month before I found out I was pregnant with Harry and found myself both grieving and preparing for a difficult and uncertain time ahead, with another child needing specialist hospital treatment.

Harry was born on Saturday 11 March 2023, by emergency c-section. Having been given so many ‘what ifs’, my anxiety was through the roof waiting for Harry to arrive. I remember hearing him cry when he was delivered and immediately, I felt so relieved.

Harry required specialist treatments and surgeries on the neonatal intensive care unit (NICU) at Evelina London Children’s Hospital, and thankfully Ronald McDonald House Charities UK was able to provide me and my family with accommodation and support again, this time at Ronald McDonald House Evelina London.

The staff at Evelina London House were incredible during my two-week stay – just amazing. I was encouraged to take time for myself to be stronger for Harry when he needed me. I remember when Mother’s Day came around and they made every family staying a personalised flower that had a photo of their child in hospital on it – I still have this proudly on display in my house.

Harry is now doing well and hitting all his expected milestones, but he does live with scoliosis and having regular checkups for his heart issues. When we have hospital appointments, I still take the time to stop by the House and catch up with the team there. It feels like I am going back to my second home, I’m always welcomed back with open arms.

I’m so incredibly grateful for everything the Charity has done for me and my family through both of my children’s hospital stays. At times where my anxiety was ‘through the roof’, both the Camberwell House and Evelina London House kept me comforted and supported, offering me more than just a place to stay. Ronald McDonald House Charities UK holds a special place in my heart.

The Charity deserves more attention for always going above and beyond for families like mine and is not talked about enough in my opinion. I’m now determined to give back to this amazing cause and amazing people as a ‘thank you’ for everything they’ve done for me. I started by offering my time when Harry has had his appointments, by volunteering and joining the wonderful Housekeeping team at the Evelina London House, assisting them with ironing and general cleaning duties.

As well as donating my time, I wanted to donate money too. Ticking off a ‘bucket list’ item and to raise as much money as possible, I decided to sign up to participate in the Ronald McDonald House Charities UK Skydive Weekend event and jump out of a plane at 14,000 feet!

On Saturday 13 July 2024, I faced my fears and successfully completed my first skydive at Headcorn Skydive Centre in Kent. It was such an amazing experience, I loved every minute, and I’m so pleased that I decided to do it. I’d set a target of £500 and was so happy to have exceeded this and raised £712!

Ronald McDonald House Charities UK deserves every penny raised, whether it’s a large or small donation, I encourage everyone to fundraise, so they can continue to support many more families with children in hospital. The Charity will always hold a special place in my heart.