We spoke to Felicity – the mother of Adaline and sister of Paralympian Stephen Clegg – who discussed the experience of watching her brother win gold at the Paralympic Games in Paris. She reflects on the excitement of taking Adaline to see Stephen compete while managing her daughter’s journey with retinoblastoma, a rare eye cancer.
Adaline’s Retinoblastoma Diagnosis
Adaline was diagnosed Grade D unilateral on the 29th of December a couple of months after her second birthday. My husband spotted a white glow in Adaline’s eye from a flash photo on Christmas morning. As soon as we started googling symptoms, I think we both knew immediately that it was retinoblastoma. Her diagnosis was incredibly quick. We were refused an eye exam by an optician due to her age, so we took her to the A&E department at the Manchester Eye Hospital on the 27 December. From there, she was seen that evening where we were told it was looking likely to be retinoblastoma and then fitted in the next morning for a second opinion from the Head Ophthalmologist. She was then referred within a couple of hours to Birmingham’s Women and Children’s Hospital who fitted us in for Adaline’s first examination under anaesthetic the very next day. Adaline showed no other symptoms other than the white glow in a flash photo. She has so far had two rounds of intra-arterial chemotherapy, and three rounds of vitreous chemo injections followed by a number of cryotherapy and laser therapy treatments.
The progress of Adaline’s treatment has been going well, but unfortunately in June we had a bump in the road when her retina detached. Shes just recently had her second attempt at surgical repair. The first one unfortunately didn’t work so we have our fingers crossed that this time it has. The retinoblastoma team at Birmingham have been incredible. We are so grateful to them all; for their knowledge and skills, and for their kindness. Every single one of them is so caring and supportive. Sarah from CHECT has been wonderful and also the retinoblastoma ward and staff nurses who always take such good care of Adaline when she has been in for procedures. Our family and friends and my husband’s employer have all been so amazing. I really don’t know what we would have done without them, they have all helped us a huge amount and have lifted a weight off us in many ways that is too much to express into words.
Watching Stephen Compete and Win Gold
We had such an incredible time, I’m so proud of him and I’m over the moon that he got his golds. We unfortunately didn’t get to make it out for his first race as we could only be there for the second week and so we were already on cloud 9 before even arriving in Paris with the news that he’d gotten gold in his backstroke event. Adaline had already been so excited just watching him on TV at home so I couldn’t wait to take her out there, it was amazing that she got to see him compete. She was cheering him on as loud as she could with her ‘Uncle Stephen’ T-shirt and banner!
I felt so nervous, even more so the closer the time gets to his race starting, it’s such a tough race and absolutely anything can happen on the day. I honestly wasn’t sure who had won until it came up on the board, because it was such a close one, but I was overwhelmed with happiness for him when I saw that he had got the gold! He is so dedicated and hardworking, this is his third Games ,so it’s been many years of hard work that’s got him where he wanted to be, he really deserves it. We all had such a wonderful time in Paris and came back home elated, we even managed to fit in a day at Disneyland which was so lovely getting to see Adaline’s little face light up when she saw all of the characters. Definitely a holiday to remember!
Adaline’s Highlights of the Event
She was so excited all the time, cheering his name. She was so good while we were in the stadium, I was expecting a few tired moments from her as it was very warm in there and such a long time for a toddler to sit down for, but she was brilliant. She was cheering and clapping for all the other contestants as well, which made me very proud of her. She loved seeing him afterwards when he came up to meet us, it was a really special memory of her getting to see him with his medal and he gifted her his gold mascot which he got during his medal ceremony, so she gave him a massive cuddle.
Family Paralympic Achievements
This is our family’s fifth Paralympics. It all began with my sister, Libby, who competed in the Beijing 2008 Games as a 100m and 200m sprinter. She went on to win two golds at the Rio 2016 Games. She ran blindfolded with a guide runner to help keep her in her lane. After Tokyo, she retired and is now a fantastic mum to her 5-year-old son. Recently, she had her first chance at presenting during the Paris Games, which was so exciting for her.
My brother James was also a swimmer, like Stephen. He competed in the London 2012 Games and won a bronze medal. He’s no longer competing and now travels the world. James recently learned to snowboard with his girlfriend, and he loves playing guitar too!
All three of my siblings have an eye condition called Stargardt’s disease. Although it’s different from Adaline’s retinoblastoma, our family is certainly familiar with life with a visual impairment. I hope our family’s journey can show other parents of visually impaired children that they can achieve anything they set their minds to.
