Ivy’s rare condition, supported by Convoy
Four and a half year old Ivy suffers from a rare condition known as Morquio Syndrome, and is supported by Convoy
Ivy Brown is a bubbly 4 1/2 year old from Albion Park. She enjoys swimming lessons, and dancing, but unfortunately her other weekly activities include, physiotherapy, speech therapy, Hydrotherapy and regular trips to Sydney for treatment. At just 16 months old Ivy was diagnosed with a
rare metabolic disorder called Morquio Syndrome MPS4A which is a storage disorder. Ivy’s body doesn’t create the enzymes to clean out her system, creating problems for her body as the storage of these enzymes attacks her organs, bones and most parts of her body. Patients with Morquio Syndrome progressively develop skeletal and joint abnormalities, respiratory and cardiac disease. Most patient achieve a full adult height of approximately 100cm between the ages of 5 and 10 years old. Ivy is approximately 90cm at age 4 ½.
“Ivy attends the day stay unit at the Westmead Children’s Hospital weekly for intravenous enzyme replacement therapy, and it is expected that this will be a lifelong treatment. It is not able to be provided outside of a tertiary children’s hospital for someone of Ivy’s age, so the family are required to take weekly trips to hospital” says Dr Carolyn Ellaway, Clinical Geneticist.
The consistent trips to Westmead are taking a toll on the young family, with mother Elouise only able to work 10 hours a week, to ensure she can make Ivy’s appointments and therapy, and husband Grant working 6 day weeks just to make ends meet. Unfortunately Grant misses out on a lot of things with Ivy and their other daughter Isabel because of his work commitments, which is difficult for both him and the family.
Ivy will require multiple surgeries during childhood and later to correct her bone abnormalities, including hip replacement and spinal surgery. She will also require ongoing close monitoring of her heart, lungs, ears and teeth to detect complications and it is likely she will require other interventions for these as well.
An application for support was made to the Illawarra Community Foundation, from funds raised during the i98FM Illawarra Convoy and support was approved for the family. “We are proud to provide this young family from Albion Park, the homeland of Convoy, with food and fuel vouchers to help ease the financial burden of Ivy’s ongoing treatment” says Marty Haynes, Convoy founder. “Families like these are the reason we get out there every year, rain hail or shine for Convoy. And its families like these that inspire the community to raise funds for Convoy. We hope this support can provide the Brown’s with a little financial relief to concentrate on Ivy’s ongoing treatment.”
The presentation of vouchers was held at Illawarra Truck Repairs and Spares, who generously donated the third highest lead truck bid in Convoy 2019 of $180,000.
“Grant and myself would like to thank the Illawarra Community for their donation to our family”, said mother Elouise. “We are so lucky to live in such a caring and supportive Community. Ivy has a very long and hard road ahead of her but knowing we live within the Illawarra makes it so much easier, Thank you so much”.
Funding information and criteria can be found on the www.illawarraconvoy.com.au website.