“All young children — truly all of us — need to have to see each and every kind of person represented in the media, whether or not they have a disability or not,” says Hayley, who writes an award-winning website named DownsSideUp. Following Frugi, Natty was in a shoot with children’s clothes brand JoJo Maman Bebe, a holiday business and the nearby tourist attraction the Eden Undertaking. A lot more lately, a youthful boy with Down’s syndrome (DS) called Seb White has appeared in M&S commercials, and Boden employed a tiny lady with cerebral palsy in its latest catalogues.
In Natty, Sainsbury’s has definitely selected a star-in-the-creating. When we very first meet, in the rose-scented gardens of the local tea rooms, she greets me with a cry that will be acquainted to mothers and fathers of small ladies everywhere. “I’m Elsa,” she announces, referencing her favourite character from the Disney film Frozen. And when I request what she did at school right now, she replies, “We did Frozen,” even although her father is insisting they need to have accomplished sums or reading.
But Natty is not the only 1 whose existence has modified in the past handful of years. Bob and Hayley, and Natty’s elder sister, Mia, 10, have all been on a steep understanding curve.
Good portrayal: Natty taking element in the Sainsbury’s marketing campaign
Right after providing birth to Mia in 2004, Hayley had several miscarriages ahead of she grew to become pregnant with Natty. At 15 weeks into her pregnancy, a scan showed that there was a 1-in-300 possibility that the infant would have the additional chromosome 21 that denotes Down’s.
“We chose not to have more testing,’’ says Hayley. “There is a conditioning to fear Down’s syndrome coupled with an assumption that if a foetus tests optimistic for it, you will instantly have a termination. But we had been lucky to have a great midwife who just reassured us we could cope, so we acquired on with it. Possibly we have been naive or perhaps arrogantly ignorant, but we’d had Mia very easily so why would the end result of this pregnancy be any distinct?’’
And when Natty was born in December 2006, Hayley and Bob’s most urgent concern was their 2nd child’s existence: following a house birth, she was born blue and silent. Later on, at the Royal Cornwall Hospital in Treliske, as soon as Natty’s oxygen amounts had been raised in the Neonatal Intensive Care Unit (NICU), the couple had been informed that their daughter did certainly have an added chromosome. One of the typical complications for young children with Down’s syndrome is a hole in the heart, and Natty had two, which were making it tougher for oxygen to circulate close to her entire body.
“I had a flash of the stereotype — of what I imagined my daughter wouldn’t be ready to do,” says Hayley. “And I had a extremely true concern for her life. I knew she would want heart surgical treatment — would I drop her? In which situation, did we dare to really like her? Would Bob blame me? Would he forgive me? I went into shock.”
Bob was far more pragmatic: “I just wanted to do the ideal for my household, safeguard and help them however was essential.”
For Hayley, the lightbulb moment came when a midwife warned her that Natty necessary breast milk. “She bluntly said to me, ‘That youngster requirements your really like now — no matter whether she lives or dies.’ It was the push I essential to get on with currently being a mother.”
Reaction to the news of Natty’s birth was muted. “People do not send cards, they really do not know whether or not to congratulate you or not,’’ says Hayley. “Someone actually explained they have been sorry to hear the news,’’ Bob adds indignantly. “But a baby is always something to rejoice about.”
And, as they the two level out, the diagnosis manufactured no big difference to Natty. “She was completely unaware of the stigma attached to her further chromosome,’’ says Hayley.
“And when we realised that, we knew who she was — our daughter, not a set of signs or predictions for the future. With Mia, we could reside in each valuable baby moment. But with Natty we had been falling into the trap of only searching ahead into the future and conjuring up difficulties. I’d even determined we would in no way be in a position to have a holiday abroad once again.” Now she shakes her head in disbelief. The household have loved plenty of holidays given that then to exotic destinations, such as Mauritius and Jamaica.
Not that the early many years were straightforward. When Natty very first came property, she couldn’t feed without having a nasogastric tube, which passes from the nose by way of the oesophagus and down to the abdomen, which Hayley learnt to insert as the county was short of skilled nurses obtainable for property visits. Aged two, Natty necessary heart surgical procedure to close 1 hole (the other had healed naturally) at Bristol Children’s Hospital. Holding her in his arms although the anaesthetic took hold was terrifying, says Bob. But the final results have been astonishing: with oxygen circulating in her blood appropriately for the very first time, Natty knowledgeable a growth and development surge. To her parents’ delight, they suddenly had a lively chocolate cake-devouring chatterbox on their hands.
Her elder sister Mia, usually protective and delicate, gained a correct playmate, too. The two became partners in crime, swimming and enjoying on the beach together, riding at the nearby stables and of course these days acting out scenes from their favourite movie, Frozen, in the garden.
For Hayley, one particular of her proudest days was when Natty began mainstream college at the age of five. It also left her with time on her hands — to start her blog, sharing data, concepts and positivity about life in a typical family members residing with Down’s syndrome. Inside of a week, her postings about Natty had been becoming go through close to the globe she now gets about 30,000 hits a month, with mother and father coming to share experiences or uncover reassurance.
She has been in demand as a speaker at parenting conferences, and encouraged to campaign for wider tolerance of Down’s (hence Natty’s star flip for Sainsbury’s), which has also observed her invited to Downing Street.
When Natty was two days old, a medical professional advised Hayley and Bob: “You are going to be ambassadors for kids like this.” The couple did not realize at 1st. “But now,” says Hayley, “when you get an electronic mail from a family or a mum on a ward who says ‘Your blog has thrown me a lifeline now I can see what the potential could hold’, then we know we’re performing the right factor.’’ Bob adds: “Hayley has located a vocation with her campaigning.’’
As for Natty, her persona could obviously take her anyplace. “Natty has a T-shirt with a quote from Hamlet on it: ‘We know what we are now but not what we could be.’ And that’s true for all of us,” says Bob. “We really don’t have any limits on our expectations for her any much more.’’
Mia Goleniowska has written a guide for siblings referred to as ‘I Adore You Natty’ (obtainable from Amazon £5.99). Hayley’s blog is downssideup.com