19 Aug 2024

A light in the dark: Betsy’s story

“If I can give any family in the same situation any words of wisdom it’s to always look for that little bit of light. You find it in the strangest of places even when times seem so dark. It can be from the kindness of others, a milestone in treatment or even hearing your little one laugh. There’s always light somewhere. Ours just happened to be in the form of a racehorse.”

Charlotte Smith’s daughter Betsy Williams was born on 4 June 2017 and was a healthy, active child who was full of energy. She went to gymnastics, dance and swimming clubs. Betsy had started to learn to ride ponies, following in the family footsteps of her dad, former jockey and now racehorse trainer Christian Williams. 

But in January 2023, when she was five, Betsy developed an ear infection and her overall health started to decline. 

“I don’t think I had ever taken her to the GP prior to this, only to have her vaccinations,” said Charlotte, 39, from Bridgend in Wales. “She just never bounced back from the ear infection. She started missing days from school because she had a temperature or painful stomach. She then began to refuse to go to gymnastics or swimming and becoming very withdrawn. Throughout February, she complained of stomach pains which would leave her in tears and rolling around the bed in pain. Then alongside this she had arm and leg pain which would keep her up through the night. I initially thought this was growing pains but soon became more persistent. 

“At the end of February she began sweating at night, so much so she would be soaking and I had to change her clothes and bedding. She would come home from school and go straight to sleep. I took her to the GP, but they didn’t show much concern. They passed it off as a virus. But I can’t quite put into words how much I was panicking at this point. I have worked as an NHS physiotherapist for the past 18 years so I had a little medical knowledge, and all her symptoms were ringing alarm bells for me.”

Charlotte continued to push for answers, visiting the GP again and then, when Betsy seemed worse, they went to A&E. Doctors there also said that they thought it was a virus, as there were no visible lumps or other signs. But Charlotte had suspicions that she knew exactly what was wrong with Betsy.

“On my third GP visit I was lucky enough to speak to a lovely doctor who patiently listened to my concerns. I told her I thought this could be leukaemia. I was holding back the tears when I said it. She tried to put my mind at rest and referred us for a full blood test.”

Within a few hours of Betsy’s blood test, the doctor rang Charlotte and asked her to take her daughter straight to Princess of Wales Hospital in Bridgend. 

“I’ll never forget that phone call. The absolute panic I felt was like nothing I’ve ever felt before. I drove to the hospital just Betsy and me. Her daddy was at the Cheltenham festival so, at this stage, oblivious to what was happening at home. Within an hour of us being in hospital, a doctor came to speak to us. It was actually me who said: “Are you telling me she has leukaemia?” To which he replied: “Yes, we believe so”. Hearing those words will haunt me forever. Even though I thought she might have it, I was still in complete shock and disbelief. I had no idea how I was going to break the news to her daddy, and I still actually have no recollection of how I told him or what I said.”

The next day Betsy was transferred to Noah’s Ark Children’s Hospital for Wales in Cardiff and on 16 March 2023 it was confirmed she had acute lymphoblastic leukaemia (ALL).

“Things started to move incredibly quickly at that point. She was given a bone marrow biopsy, blood transfusions, had a portacath fitted, which helps to administer medication, and she began chemotherapy. It was so much to take in. We were still in shock and feeling so much sadness. I often found myself drifting away when doctors were speaking to us. My mind was full of the worry of how we would juggle caring for Betsy and maintaining some normality for her sister, Tilly, who was seven at the time.

“Throughout the early part of her diagnosis, incredibly, Betsy continued to smile. She never asked any questions which was unusual as she is a child who asks so many questions about everything! She accepted what was happening. But nothing can prepare you for seeing your child so distressed from having needles and tubes fitted, being pinned down and restrained, and knowing this is going to be their life for the next two years.”

The initial stage of Betsy’s treatment was six weeks of cycles of chemotherapy, lumbar punctures and steroids.

“Despite the strength and resilience Betsy was showing, this phase of treatment completely changed her personality. She was uncomfortable, restless and irritable. She also looked completely different. She had started ballooning with the steroids and her hair was thinning. This was the most difficult time for us all. We didn’t know at this point if treatment was working, and the future terrified us.

“But we were occasionally able to catch a glimpse of light. And that light was in the form of a racehorse who was very appropriately named Kitty’s Light. He was only small, just seven years old, and a very kind horse. Christian had trained him for several years and he had become part of the family. On 22nd April 2023 he had been entered in the Scottish Grand National at Ayr. It was a Saturday afternoon and Betsy was having a particularly tough day. I can’t say that I had much interest in even watching the race that day, but I turned it on as I thought it would cheer Betsy up seeing her daddy on TV. She was doing her jigsaw and wasn’t interested to start with but, to our absolute delight, this little warrior of a horse won! We were all so excited! It felt like the world was against us but to see this horse win completely changed our perspective and gave us hope. Good things can happen to us, and it gave us a little glimpse of happiness for that short while where we almost forgot what we were going through.”

Kitty’s Light won the Bet365 Gold Cup in Sandown Isle of Wight just a week later, giving the family another much-needed boost which they carried through the roller-coaster of the six months of chemotherapy, during which Betsy contracted multiple infections and needed emergency hospital admissions.

“We couldn’t see family or friends as Betsy’s immune system was so low. She became very isolated and missed her friends and routines. Our days were lonely, but we tried to make things as normal as we could for her and one thing that helped get us through this time was talking about Kitty’s Light and following our horses. 

“Betsy lost her hair in July which was one of the most traumatic times for us all. To me, it symbolised what she was going through. Our little girl had cancer. It was a constant reminder of the reality of what was happening. Seeing her studying herself in the mirror with tears in her eyes when it was falling out was heart breaking.”

Now back home and on the maintenance phase of her treatment, Betsy has daily oral chemotherapy, an intravenous infusion once a month, and a lumbar puncture every three months. She has also returned to school most days of the week. Kitty’s Light has also put in another inspiring performance – this time at the Grand National. 

“That day in Aintree was surreal. We really weren’t sure until a day before we went if Betsy would be well enough to go, but she certainly found the strength from somewhere. We were there as a family of four all together watching our horse that we love so much, showing the world how special he is. Kitty’s Light has given us so much hope and joy in our darkest days. I was so proud that day. He finished fifth but to us he might as well have won the way we were feeling. The girls laughed and smiled all day, everybody made so much fuss of them. We were so happy.

“Betsy and the other children on Rainbow Ward at Noah’s Ark hospital have shown and continue to show so much strength and resilience. One thing Betsy has taught me is to live in the here and now. She only focuses on today. She doesn’t dwell on things that have happened in the past and she doesn’t look to the future which absolutely terrifies us.  Watching her go through this has changed our lives and she has taught us so much.

“There have been great advances in treating childhood leukaemia over the years, but there’s so much more that needs to be done. Our children shouldn’t have to go through this. If I can give any family in the same situation any words of wisdom it’s to always look for that little bit of light. You find it in the strangest of places even when times seem so dark. It can be from the kindness of others, a milestone in treatment or even hearing your little one laugh. There’s always light somewhere. Ours just happened to be in the form of a racehorse.”

Discover more stories from our community.

A little girl, Betsy, strokes a racehorse

Kitty’s Light gave Betsy and her family hope and joy even in their darkest days`

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