Sheree Hammond will tell you – her daughters are bright, loving and determined. Sure, they can be naughty too. But there’s something about three year-old Ella that makes her different from her seven year-old sister Kyla.
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The Aberglasslyn toddler has been diagnosed with a rare form of Marfan Syndrome – Neonatal Marfan.
Marfan Syndrome is a genetic disease that affects the connecting tissue in the body.
It affects about one in 5,000 people and those with the condition often grow tall and thin.
It brings a swathe of medical issues that range from vision impairment to organ damage.
But in the case of Ella; three out of her heart’s four valves are compromised.
After spending much of her young life in hospital, Ella will undergo another major operation on July 1 to install magnetic growth rods.
She will become one of Australia’s youngest children to be put into halo traction.
The doctors hope they can correct Ella’s severe scoliosis which is putting dangerous pressure on her heart and lungs.
Then, in December, she’ll be back under the knife for her second open-heart surgery at Westmead.
She’ll be given another mechanical valve to replace her aortic valve.
Ms Hammond said that while she has always known these operations were coming down the line for her daughter, they’re the most harrowing barriers now standing between Ella and adulthood.
“After her heart operation I’m hoping her world will open up,” Ms Hammond said.
“I’m hoping her future is bright.”
From transport to her Sydney-based specialists to accommodation, food and life saving medical equipment – Ella’s treatment costs will be ongoing.
And while Ms Hammond is not one for the limelight, her daughter’s carer, Melissa Gontier, has started a GoFundMe page to ask the community to support the single-parent family through the tough year ahead.
Neonatal Marfan has made life for the Hammonds uncertain at best and terrifying at worst.
“In Australia there’re only three people I know of who are alive,” Ms Hammond said.
“One is 21, another is 11. And I think if those two can make it, so can she.”
Despite her mother’s defiant optimism, there were times Ella was almost another tragic statistic. In October 2013, at just one year of age, she went into cardiac failure.
“We were in and out of hospital that year, it was like a revolving door,” Ms Hammond said.
Ella was airlifted from Maitland Hospital to Randwick and then to Westmead Children’s Hospital.
“The mitral valve which is the main valve in her heart was failing.”.
Later that month, surgeon Richard Chard volunteered to perform open heart surgery on Ella. But he warned her parents the odds were heavily stacked against her.
“The option was to take her home and enjoy her, or take our chances with a mechanical valve,” she said.
“About four and-a-half hours through the operation I got a call and I thought – she’s gone. I’ll never forget this, we sat in a room for 45 minutes. Then a person walked in and said ‘She’s here,’.
“She wasn’t even one [year old]. It was my decision to put her on that table… I live every day with the weight on my shoulders of putting her in the hands of surgeons. And I felt then I had made the right decision.”
A month later, on Christmas day, Ella contracted a rhinovirus – a common cold. But it nearly killed her.
Since then Ms Hammond has kept Ella inside to minimise her chances of further infections. Since the end of 2013, Ms Hammond said, the mission has been to keep Ella growing and free from illness. All in preparation for these upcoming surgeries.
Ms Hammond said she feels like she’s on autopilot, waiting for Ella to wake up on the other side of the operating theatre.
“I want to get this out of the way so she can enjoy the world out there,” she said.
“The best thing I could give her is the opportunity to walk and play with her sister.”
Read more about Ella and support her family at gofundme.com/MissEllaRose.
