Kayden and Ivy's Story

01 Oct 2018

Best friends forever

Kayden and Ivy met during treatment and developed a beautiful friendship.

Kayden, nine years old, and Ivy who's just three years old, were both born with metabolic disorders collectively called Mucopolysaccharidosis (MPS). Characterised by the absence or malfunction of certain enzymes, the conditions affect the way bone, cartilage, tendons, corneas, skin and connective tissue develop.

For Kayden, who has MPS type 6, the condition means that he is missing the enzyme needed to breakdown sugar molecules. Instead, these molecules are deposited throughout his body, enlarging and scarring his organs and tissue.

For Ivy, who has MPS type 4A, the condition affects her growth and stature, and she has problems with her eyes, ears, and heart.

While Kayden was born with the condition, he was only formally diagnosed last year after he began experiencing pain in his legs. Referred to The Children’s Hospital at Westmead, doctors started Kayden on weekly enzyme-replacement therapy to manage his condition. Every Friday, Kayden has a four-hour-long infusion to filter out the sugar deposits in his body.

Two months after Kayden started receiving his infusions, Ivy began her treatment. Being just two years old, Ivy was understandably frightened of the injections involved in the treatment, but meeting Kayden helped settle and calm her.

He showed her that he was going through the same thing; they compared cannulas and sat side-sy-side, and over the weeks that followed, Ivy became less scared of her treatment, and their friendship blossomed.

Kayden and Ivy are now almost inseparable, sitting next to each other each week for their infusions and talking non-stop. For both sets of parents, it's reassuring to know their child has someone to share the journey with.

On Friday, 12 October, Kayden and Ivy’s day will be much more exciting than normal because that day is #Radiothon2018 and the Hospital will be transformed into a Big Top and packed with things to do and see.

For 24 hours only every #Radiothon2018 donation—no matter how big or small—will be doubled!

We're calling it the Greatest Double Act on Earth as we double the impact #forsickkids.