It’s not every day that a Strictly Come Dancing star knocks on your door to wish you happy birthday – but that’s what happened to dance-mad seven-year-old Alya Waites.
Alya suffers from a rare heart condition which meant she under went three life-saving heart operations before she turned four.
She is a big Strictly fan, so when a charity auction by the Sick Children’s Trust had a lot of a dancing lesson with Anton du Beke they decided to make a bid for Alya.
“To our surprise our bid won,” says mum Clare from West Yorkshire. “But due to Covid she couldn’t have the lesson and so I wrote to the Sick Children’s Trust, explaining about Alya and asking if it could be postponed. The next thing I know they said that Anton wanted to come and meet Alya and bring her a birthday surprise.”
And that’s exactly what he did.
“After hearing all about Alya I felt so inspired by her strength. She is an amazing little girl, and a talented dancer,” says Anton.
“I am so pleased that despite the current challenging circumstances and social distancing that I could do just a little something to put a big smile on her face for her birthday.”
Alya, who attends ballet class via Zoom every Saturday morning, said: “I never thought my favourite Strictly dancer would visit me to say happy birthday. Mummy and daddy told me there was a surprise visitor and I thought it might be a friend from school. Seeing Anton was even better. I felt so happy, excited and special.”
Alya’s parents knew even before she was born that their little girl had a serious heart problem.
“The early scans showed there was a problem but we didn’t really know what to expect,” says Clare. “It was a very worrying pregnancy as a result.”
Alya was born with a rare heart condition (truncus arteriosus) which meant her heart didn’t work properly and made it difficult for her to breathe. She has spent much of her life in and out of Leeds Children’s Hospital undergoing lifesaving surgery and treatment including three heart operations before she was four years old.
“We don’t know why Alya was born with this condition, but if we were to have another baby there is a chance it may have it too, we don’t know, “ says Clare.
“Alya was 15 days old when she had to have the first operation and we knew she would have to have more as she got older.”
Alya is also partially sighted. She now has a mechanical heart valve which her mum says you can hear ticking.
“It’s like the sounds the crocodile makes in Peter Pan. At first I found it worrying but now it’s reassuring.”
Over the years Clare and husband Adam, have been supported by The Sick Children’s Trust which gave them a place to stay at its ‘‘Home from Home’’ Eckersley House, minutes from their daughter’s side.
“We didn’t know what it would be like being in hospital for over five weeks and our baby having a major operation,” recalls Clare. “Everything was quite traumatic and we were living day to day which is why Eckersley House, run by The Sick Children’s Trust, remains such an important part of our lives as it was there for us, offering what we needed.”
Due to Alya’s condition, she is very prone to chest infections which often end up with another stay in hospital. The Waites have had more than three stays at Eckersley House and have also been supported by the Children’s Heart Surgery Fund.
“We managed to get home for five months before Alya became ill with a chest infection and we ended up back in hospital for a month.” After her second surgery Clare and Adam would take it in turns – one at Alya’s bedside and the other catching some sleep at Eckersley House.
Over the next couple of years, Alya did really well, but by the time she reached four years old, it was discovered that the donor valve that she had received was leaking and needed replacing.
“Having a four-year-old in hospital brought a lot more challenges than having a baby in hospital as Alya had more understanding and was aware of what was going on,” says Clare.
“She also has a visual impairment so it’s important that any nurse or doctor tells her exactly what is happening before they do a procedure, such as taking her bloods. It was much more distressing for her this time around.
“We couldn’t really leave her side like we had done previously to go and grab a coffee which is why when we were given a place to stay at Eckersley House on this occasion it made the biggest difference to our own wellbeing.”
Alya knows about her heart and the special valve she has and deals with everything very well, says her mum.
“We talk about any of her worries and answer any questions to reassure her. Alya will need more heart surgery because she will grow out of the valve she currently has, but knowing there is a place to stay that is close to her side so she doesn’t have to go through this alone is a huge comfort.”
It was to say thank you to the Sick Children’s Trust that made Clare take part in the online auction to raise funds for the charity, the runs homes from home like Eckersley House.
“Your child being is hospital is traumatic but can be made easier with help from The Sick Children’s Trust and as a family we want to do whatever we can to help raise awareness of this incredible service.”
Alya was rather stuck for words with the shock of seeing Anton on her doorstep with a birthday cake, but she has the video to look back on and the Strictly star promised she would still get his masterclass when the pandemic allows.
For more information or to donate to the charity visit sickchildrenstrust.org/donate