Dressed in a shimmering blue Disney princess gown, little Frozen fan Isabella Winfield tentatively steps towards her birthday cake, takes a big breath, and blows out the candle shaped in the figure ‘3’.
“Happy birthday, Izzy,” chorus nursery staff, parents, pals and The Sunday Post team – there to capture her milestone moment.
As quick as the flash on our camera, she answers in a heart-melting moment: “I’m not Izzy, I’m Princess Elsa!”
At first glance, there’s nothing unusual about a third birthday party with nursery chums, a few days before the big event itself on April 30 – when Isabella will be preparing to attend a family wedding.
But, three years ago, The Sunday Post exclusively revealed how her parents, IT trainer Richard Winfield, 39, and translator mum Margaret Paluszynska, 38, were given the earth-shattering news that their child had the rare, life-threatening condition Spinal Muscular Atrophy, which could see her trapped in her own body for as long as she lived.
It took the miracle drug Zolgensma, then the world’s most expensive at £1.79 million for a single, one-off dose, to give her a future. Little Isabella was just 20 days old when she became the youngest person in the UK – and one of the youngest in the world – to have the treatment on the NHS. Without it she is unlikely to have ever been able to sit, stand or walk.
A fairytale birthday
Her party with friends Isla Anderson and Ava-Rose Taylor, both aged two, at the Ladybird Development Group in Lossiemouth, Moray, is a day her devoted parents at one time would not have dreamed possible.
Taking time out from the celebration, Margaret, from nearby Archiestown, and now her daughter’s full-time carer, told The Sunday Post: “Izzy has a completely different quality of life to the one she would have had without Zolgensma. It is wonderful that she can do so much herself. The most distressing thing was that she would have been trapped in her own body unable to do what she wants.
“She is fiercely independent where she can be, and she won’t let you help her unless she is tired. She is forever saying ‘I am doing this myself Mummy!’. She loves Disney’s Frozen, and has the books and the music video and sings Let It Go. She has so many Princess Elsa dolls and five Elsa dresses. I can’t talk her out of them!”
Determined Isabella – who has scoliosis, a curvature of her spine – takes her steps with the aid of a “walker” (a frame on wheels with a seat) and is also supported by a back brace and leg splints. She regularly attends physiotherapy sessions at the hydrotherapy pool in nearby Forres.
Her mum said: “She’s made amazing progress there. When she’s in the water and the tug of gravity is taken away, she can walk so well. It gives you hope for what she’ll be doing once she gets strong enough. And the determination she shows is quite something! She almost runs along that shallow ledge, her ‘mummy no help’ mode in overdrive.”
Not only can she finally walk, talk and play, Isabella is ahead of her years developmentally, easily completing puzzles designed for older children. Margaret said: “She loves singing and even sings in my native Polish. She frequently comes out with quotes from her book, has started her ABC and can count to 12. She is so interested in the world around her.”
Isabella’s milestones
Dad Richard is amazed at the milestones achieved.
“Izzy constantly surprises me. She chats all the time, it’s exhausting but in a good way because it shows how much she is cracking on. She is dangerously smart and observant. You don’t dare say anything around her, the chances are it will come back to haunt you later,” he laughed. “I am very proud of the progress she is making and am very grateful to the NHS for making it possible.”
Margaret smiled: “Izzy has some limitations, but overall, she is doing well. She’s a very happy little girl,” to which the independent miss countered: “I am not a little girl, I am a big girl!”
Isabella was born in 2021 with Type 1 SMA (spinal muscular atrophy), the most severe form of the rare degenerative illness that occurs in only three cases each year in Scotland. It affects the motor neurons – nerve cells located in the spinal cord that control voluntary muscle movement. Because the muscles cannot respond to signals from the nerves, they atrophy – weaken and shrink – from inactivity. It also causes a range of life-shortening health issues, including breathing and swallowing difficulties.
She was one of only two infants born in Scotland at the time who were treated with the potentially life-saving drug – a gene therapy – described as the world’s most expensive.
Miracle drug Zolgensma
Glasgow’s Royal Hospital for Children had given the first UK dose in February 2021 to a baby – who remains anonymous – with Isabella receiving the treatment in May, just 20 days after her birth and a week after diagnosis.
Five days later, five-month-old Arthur Morgan became the first baby in England to get the drug. There was no guarantee, however, the treatment would work.
The Glasgow hospital’s Dr Iain Horrocks – 2022 recipient of a Lifetime Achievement Award in the Scottish Children’s Health Awards for his “outstanding contributions” – told The Post: “Isabella’s progress has been truly remarkable – she has amazed us all. We wish her a very happy third birthday.”
Andi Couper, manager of the Ladybird Development Group, said: “Izzy is full of life and totally involved with all the activities here. She loves games and imaginative play.”
And her key worker, Shona Stewart, added: “Izzy is a delightful little girl, full of fun, very articulate, and very happy to be at nursery.”
The birthday girl’s thrilled parents are now gearing up for family gatherings in Spain and Poland where their little one will celebrate her third birthday all over again.
They have bought her a radio-controlled car, which they say she can easily operate using “fine motor skills” and with which she’ll have fun driving her dollies. It’s painted in her favourite colour.
“What is your favourite colour, Izzy?” we asked her. She beamed: “Pink when I am Izzy, and blue when I am Elsa,” before abandoning The Sunday Post to play in the garden.
Clearly, that’s not open to negotiation. So, in the words of her favourite song, we Let It Go.
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