No limits placed on adorable Natalia’s future
Natalia’s the child model with Down syndrome. Her parents talk about their extraordinary daughter in an interview with Victoria Lambert.
HER fudge-blonde hair shining in the Cornish sun, huge trademark grin in place, young Natalia Goleniowska is giggling, pouting and enchanting her way through a photoshoot on a village green near her home in Truro.
She swirls her brightlycoloured skirts, professionally, and lies down in the daisies without a complaint.
The experience of modelling is nothing new to Natalia, or Natty, as she is known to family and her wide circle of friends. This summer her peaches-and-cream complexion will be splashed across Sainsbury’s advertisements for its Back-to-School range of children’s clothing – a shoot that has drawn attention this week for including 7-year-old Natty, who has Down syndrome, in its line-up.
‘‘It would be nice,’’ sighs her mother, Hayley, ‘‘if this wasn’t news. But we are grateful that Sainsbury’s chose Natty for the shoot. The more that advertising is inclusive – showing children in wheelchairs, with Down syndrome or any other disability – the better. And one day, we hope it won’t be surprising.’’
Hayley, 43, a former languages teacher, and her husband Bob, 59, who is semi-retired from the music industry, are on a mission when it comes to the portrayal of children in the media. Natty first appeared in an advertisement for clothing company Frugi when she was 4, after Hayley had written to countless clothing firms to ask them to consider being more openminded when choosing models.
‘‘All children – actually all of us – need to see every sort of person represented in the media, whether they have a disability or not,’’ says Hayley.
After Frugi, Natty was in a shoot with children’s clothing brand JoJo Maman Bebe, a holiday company and local tourist attraction the Eden Project. More recently, a young boy with Down called Seb White has appeared in Marks & Spencer advertisements, and Boden employed a little girl with cerebral palsy in its recent catalogues.
Natty’s is not the only life that has changed. Bob, Hayley, and sister, Mia, 10, have all been on a steep learning curve.
After giving birth to Mia in 2004, Hayley had several miscarriages before she became pregnant with Natty. At 15 weeks, a scan showed that there was a 1-in-300 chance that the baby would have the extra chromosome 21 that denotes Down.
‘‘We chose not to have further testing,’’ says Hayley. ‘‘There is a conditioning to fear Down syndrome coupled with an assumption that if a foetus tests positive for it, you will automatically have a termination. But we were lucky to have a fantastic midwife who just reassured us we could cope, so we got on with it.
‘‘Maybe we were naive or perhaps arrogantly ignorant, but we’d had Mia easily so why would the outcome of this pregnancy be any different?’’
And when Natty was born in December 2006, Hayley and Bob’s most urgent concern was her life: following a home birth, she was born blue and silent. Later, at the Royal Cornwall Hospital in Treliske, once Natty’s oxygen levels had been raised in the Neonatal Intensive Care Unit (NICU), the couple were told that their daughter did indeed have an extra chromosome.
One of the common complications for children with Down syndrome is a hole in the heart, and Natty had two, which were making it harder for oxygen to circulate around her body.
‘‘I had a flash of the stereotype – of what I thought my daughter wouldn’t be able to do,’’ says Hayley. ‘‘And I had a very real fear for her life. I knew she would need heart surgery – would I lose
Natalia Goleniowska’s mother, Hayley her? In which case, did we dare to love her? Would Bob blame me? Would he forgive me? I went into shock.’’
Bob was more pragmatic: ‘‘I just wanted to do the best for my family, protect and support them however was necessary.’’
For Hayley, the lightbulb moment came when a midwife warned her that Natty needed breast milk. ‘‘She bluntly said to me, ‘That child needs your love now – whether she lives or dies.’
‘‘It was the push I needed to get on with being a mother.’’
Reaction to the news of Natty’s birth was muted. ‘‘People don’t send cards, they don’t know whether to congratulate you or not,’’ says Hayley. ‘‘Someone actually said they were sorry to hear the news,’’ Bob adds indignantly.
‘‘But a baby is always something to rejoice about.’’
And, as they both point out, the diagnosis made no difference to Natty. ‘‘She was completely unaware of the stigma attached to her extra chromosome,’’ says Hayley.
‘‘And when we realised that, we knew who she was – our daughter, not a set of symptoms or predictions for the future.’’
Not that the early years were easy. When Natty first came home, she couldn’t feed without a nasogastric tube. Aged 2, Natty needed heart surgery to close one hole (the other healed naturally) at Bristol Children’s Hospital.
But the results were astonishing: with oxygen circulating in her blood properly for the first time, Natty experienced a growth and development surge. To her parents’ delight, they suddenly had a lively chocolate cakedevouring chatterbox on their hands.
Her personality could clearly take her anywhere. ‘‘Natty has a T-shirt with a quote from Hamlet on it: ‘ We know what we are now but not what we may be.’ And that’s true for all of us,’’ says Bob. ‘‘We don’t have any limits on our expectations for her any more.’’