Robyn Statham and Jodie O'Sullivan share the journey of having a child with Williams Syndrome

Olive Statham is the shining star of school drop-off and pick-up at Howlong.

WE ARE FAMILY: Robyn Statham, of Howlong, with daughters Olive, 3,  Mabel, 1, and Pearl, 5 ahead of the first Border Unicorn Festival on May 27. Pictures: CARMELA PARKIN

WE ARE FAMILY: Robyn Statham, of Howlong, with daughters Olive, 3, Mabel, 1, and Pearl, 5 ahead of the first Border Unicorn Festival on May 27. Pictures: CARMELA PARKIN

The bubbly 3-year-old wants to give everyone a cuddle and gets plenty of invites to older sister Pearl’s parties.

“She’s the funniest little kid,” mum Robyn says.

“She’s super friendly and goes up to people in the IGA  … everyone knows Olive.”

MAGICAL ENCOUNTER: Bubbly Olive Statham, 3, meets Tilly the unicorn - Olive has a rare genetic condition called Williams Syndrome.

MAGICAL ENCOUNTER: Bubbly Olive Statham, 3, meets Tilly the unicorn - Olive has a rare genetic condition called Williams Syndrome.

A highly sociable personality is one of the endearing traits of Williams Syndrome, a rare disorder caused by the spontaneous deletion of genes on chromosome 7.

The condition comes with a range of medical problems and developmental delays.

Robyn and her sister Bronwyn McCormack are hoping to create a magical day of awareness with the inaugural Border Unicorn Festival on Sunday, May 27.

Set in the enchanting environs of Albury’s Botanic Gardens, the free community event offers a fun-filled day of unicorn-themed food and craft stalls for the young and young-at-heart from 10am to 1pm.

The event is a fundraiser for the Williams Syndrome Family Support Group (Vic), which aims to increase understanding about a disorder not always diagnosed.

For Robyn the first hint of a problem came with her pregnancy; it was a very different experience to having Pearl.

“We had more check-ups, she wasn’t growing, her heart was monitored and I was induced a week early,” she recalls.

Olive was born on February 5, 2015 weighing 2860 grams and as soon as she got home, Robyn sensed things were not right.

“She wasn’t feeding properly and she screamed all the time,” she recalls.

“I persisted with breastfeeding but people were telling me she needed a bottle … everyone’s an expert on what your baby needs.”

One night after a bath, Olive screamed so hard that two lumps popped up in her groin, Robyn recalls.

She had surgery to repair a bilateral inguinal hernia at 10 weeks of age.

Olive was also diagnosed with “failure to thrive” – a horrible feeling for a mum.

“We tried different formulas, thickeners and cut out teats; she always had a rash … there were food intolerances,” Robyn recalls.

“I was feeling helpless thinking how can we help our baby when we don’t know what’s wrong.”

Robyn noticed Olive was not smiling at 6 to 8 weeks of age.

“Austen (my husband) and I were worried; we knew something was not right,” she says.

“I looked up autism but the traits didn’t match.”

On top of that a chance admission to Albury hospital for suspected whooping cough saw a paediatrician casually mention Olive had a heart murmur.

That necessitated regular visits to Melbourne’s Royal Children’s Hospital until the issues resolved enough for Olive to attend an outreach clinic in Albury annually.

At 18 months, Olive was tiny, she wasn’t walking and had no speech, Robyn says.

She was undergoing developmental assessments before their paediatrician decided on further testing.

“I was told over the phone my daughter was missing DNA from chromosome 7,” Robyn says.

“I was already pregnant with Mabel when we found out in October 2016 that Olive had Williams Syndrome.

“I was immediately scared as I was worried the baby could have it too; we underwent genetic counselling where they explained it was a completely random occurence and tests showed neither Austen nor I were carriers.”

But just to be certain Robyn was rushed down to the Royal Women’s Hospital in Melbourne to have an amniocentesis to test if the baby had WS.

“The nurses called a few days before Christmas to tell us our baby was fine – it was the best Christmas present ever.”

FROM LITTLE THINGS: Norah O'Sullivan-Heath, 2, and Olive Statham, 3, both have Williams Syndrome, a rare genetic condition involving a series of deletions on chromosome 7. Picture: CARMELA PARKIN

FROM LITTLE THINGS: Norah O'Sullivan-Heath, 2, and Olive Statham, 3, both have Williams Syndrome, a rare genetic condition involving a series of deletions on chromosome 7. Picture: CARMELA PARKIN

Story all too familiar ...

As a journalist of more than 20 years, I never imagined one day I would be the subject rather than the storyteller.

My first pregnancy at 39 years old had seen the arrival of a bouncing 10-pound daughter, Tully, in 2013.

I took to breastfeeding like a duck to water, sailed through the early months of motherhood and delighted in every milestone Tully reached with smug satisfaction.

I fell pregnant again at 40 and from the start it didn’t feel right.

I lost a twin at about 14 weeks but standard tests (and a few extra for my “advanced maternal age”) revealed nothing so we soldiered on.

But as the pregnancy progressed, my little person did not.

Doctors started to worry and from about 28 weeks, there was a revolving door of appointments between specialists with constant monitoring of Norah’s growth.

At 36 weeks, the decision was made to bring Norah into the world. She was born by caesarian on October 16, 2015, at Wodonga … one day after Tully’s birthday.

She weighed 2000 grams, developed respiratory distress and was flown to Monash Hospital’s Neonatal Intensive Care Unit.

THE GREAT UNKNOWN: Norah was born by C-section at Wodonga on October 16, 2015 and flown to the Neonatal Intensive Care Unit of Monash Children's Hospital in severe respiratory distress.

THE GREAT UNKNOWN: Norah was born by C-section at Wodonga on October 16, 2015 and flown to the Neonatal Intensive Care Unit of Monash Children's Hospital in severe respiratory distress.

It’s a form of torture to be left behind in a maternity ward to recover – with no baby.

Desperate to be with Norah, I discharged myself two days later and friends drove me to Melbourne.

Once she was stabilised at Monash, Norah returned to Wodonga’s special care nursery for many weeks; she was tube fed and I longed to breast feed her.

A MOTHER'S TOUCH: Border Mail journalist Jodie O'Sullivan (top) gets a moment to hold her tiny daughter in the critical care unit at Melbourne two days after she was born.

A MOTHER'S TOUCH: Border Mail journalist Jodie O'Sullivan (top) gets a moment to hold her tiny daughter in the critical care unit at Melbourne two days after she was born.

Norah just couldn’t seem to get the hang of it so I expressed hoping she would get there eventually; in fact she struggled to cope with a bottle.

At home Norah took up to two hours at each feed to take in a barely adequate quantity of milk. 

She would writhe in pain and then vomit up the tiny bit of nourishment I managed to get into her. Norah, too, developed a hernia.

I would express and start the process all over again.

Norah screamed and screamed and screamed – often for up to 8 hours at a time - but would take no comfort from me holding her.

I knew, as only a mother can know, there was something seriously wrong.

Meanwhile the girls’ father worked away on a fly-in, fly-out roster.

Norah was hospitalised twice in two months for “failure to thrive”. 

Male medicos told me Norah was just  a “tricky” baby, suggested I sing more nursery rhymes with her and try harder to breastfeed.

But I knew this tiny baby was struggling with something I couldn’t pinpoint and I felt completely powerless to help her.

Eventually a concerned professional encouraged us to get a second opinion. 

That someone believed me was enough to galvanise me into action.

The rest, as they say, is history.

It took less than five minutes for the private paediatrician I consulted in Melbourne to tell us what I already knew.

I didn’t even cry when she said she would need to run extensive tests to investigate the cause of Norah’s developmental delays – she was four months old.

Two weeks later we had our answer.

As soon as I googled Williams Syndrome, the shadows lifted – at last I had an explanation for the struggles of previous months.

Of course a diagnosis didn’t miraculously change the day-to-day challenges that come with juggling the complex needs of a baby with a disability and a bright and active toddler.

But with the unwavering assistance of heroic friends and with Aspire Early Intervention Services on board, we smoothed a pathway of support.

Norah is now 2½ years old; she has only recently started walking but is yet to speak any words.

As soon as I googled Williams Syndrome, the shadows lifted – at last I had an explanation for the struggles of previous months.

Jodie O'Sullivan

Every milestone I took for granted with Tully is now valiantly fought for with Norah … and joyously celebrated.

The day she finally reached out her arms for me to pick her up made my heart overflow. 

Grateful for a diagnosis ...

Robyn, too, recalls how thankful she was to have answers.

“It meant we could move forward to help Olive,” she says.

It’s still not always easy to juggle the extra commitments around daily life.

“There are challenges mainly with the time Olive needs,” Robyn admits.

“She needs more time to feed and more time to get to sleep and she has more appointments.”

But the joy this endearing little girl brings to her family is priceless.

“If I’m having a bad day, Olive will say hello and give me a cuddle and you just can’t help but feel happy again,” Robyn says.

The mother of three is deeply grateful for the unwavering support of her extended family that helps lighten the load.

“The help I have from my family is incredible,” she says.

“When I’ve had a whole day by myself or now that Austen gets home from work at 5pm instead of 4pm, I can walk around to my mum’s place for an hour … that makes all the difference.”

Olive’s irresistible personality has been embraced by her close-knit community of Howlong.

They have put new meaning – and fundraising – into the saying it takes a village to raise a child.

Now Robyn hopes the weather gods sprinkle their blessings on what promises to be an enchanting event.

“I am so excited about the festival –  we want it to be a fun day where people come along and enjoy all the magic of unicorns.”

  • The Border Unicorn Festival will be held at Albury’s Botanic Gardens on Sunday, May 27 from 10am to 1pm. Entry is free with gold coin donations for unicorn-themed activities. For more information or details of stall holders, visit the Facebook page.