‘Ivy has a rare genetic disorder called Mucopolysaccharidosis, or MPS,’ the doctor said.
‘What does that mean?’ I asked, scared.
‘She’s not producing enough of the enzyme needed to break down materials her body can’t use. They’ll build up in her tissues, bones, and organs, causing problems.’
Those problems potentially included vision and hearing loss, skeletal abnormalities, heart disease, breathing difficulties... and a short life span. We were devastated.
'There's no cure right now,' the doctor added. 'Ivy will stop growing by the age of six.'
I couldn't believe you would never grow up.
There was an enzyme replacement therapy called Vimizim which would help keep you alive but it was so expensive we couldn’t afford it. Thankfully, 12 months later, it became available through the Children’s Hospital at Westmead, NSW.
You began having weekly infusions of it there – the youngest child in the world with MPS to start this treatment. We’d go every Friday, leaving home at 5am.
The enzyme infusion, made through a port in your chest, took six hours.
There, you also made a best friend – Kayden. He was nine, and like you, had MPS. You had your infusions together and became inseparable.
When you were scared, he’d tell you everything would be all right, or make a funny noise to make you laugh. And you learnt to do the same for him.
While you’re smaller than all your friends, you’re as bright as can be
The Westmead staff became our second family. Nurse Jeneen Clark was like your fairy godmother, managing to make the long day more fun, while the Starlight Foundation’s clown doctors always made you giggle.
We were so grateful. So when Westmead asked you to be one of the faces of their annual fundraising event, Radiothon 2018, we were thrilled.
The hospital was transformed into a circus, complete with carousel, sideshow alley and stilt walkers. And they dressed you as a lion cub – the most adorable one ever.
‘Give us a roar,’ I said.
‘Roar!’ you cried, with as much ferocity as you could muster. I couldn’t stop laughing.
You paraded around proudly with Kayden, who was dressed as a ringmaster. You two made the cutest couple.
The 24-hour appeal was broadcast live on air. And we were stoked when almost four and a half million dollars was raised.
Today you’re three. While you’re smaller than all your friends, you’re as bright as can be. However you’re limited physically. You can’t jump on a trampoline or play team sports because if your head gets hit, it could damage your spine.
You’re in a back brace 24/7 to help you walk. The nurse said it would take 6-8 weeks to get used to it but within two days, you wore it all the time without complaint.
You idolise your dad. He takes you to the weekly dance class and swimming lessons that you adore and every morning, he cooks
you pancakes because you love them. Marrying him was the best thing I ever did.
And even though your sister Isabel is 14, you’re incredibly close. I’ll often find the two of you ‘playing hairdressers’ or snuggled up together reading a book.
Recently you had your crumbly hips reconstructed. The surgery took seven hours and left you in a full body cast.
When you finally came out of hospital I was pushing you in the pram when a woman pointed you out to her husband, saying, ‘Oh my god, look at that.’
Furious, I bit my tongue because I didn’t want to spoil our day together. I know people can see you’re different but I don’t want them to stare.
I want them to say hello and meet the real Ivy. The kind and gentle Ivy who loves to dance and has a smile for everyone.
You taught me how to love unconditionally
We don’t talk about the future but every day I tell you I love you because if your hearing does go, I want you to remember me saying those words.
Ivy, you’ll never be a professional ballerina or an elite swimmer but I couldn’t be prouder to be your mother. You’ve taught me so much. You taught me that you don’t need to be perfect to be a perfect person.
You taught me how to love unconditionally. You taught me nothing is too hard. You’re my hero. You never see the bad in anyone. I’ve never met a person who hasn’t fallen in love with you.
I hope you always stay my happy, bubbly and loving little girl. But above all, you’re brave. You’ve never once complained about the constant hospital visits or the invasive treatments you’ve had.
So sometimes I look at the photos of you at the fundraiser and smile. Because that costume was you. You didn’t just dress as
a lion. You have the heart of one. ￼
All my love, Mummy xxx
This March, the Children’s Hospital at Westmead will be holding its 30th Bandaged Bear Appeal.
For more, go to bandagedbear.org.au