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Maddie’s vision for a cure

FEW five year old boys can claim to not have slept at home for more than a year.
That’s been the reality for Leongatha boy Elliot Vanderland but it has not been a decision of his making.
The past 12 months have been challenging for the smiling boy, who has endured two bone marrow transplants and celebrated his fifth birthday in hospital as he fights two types of bone marrow failures: Dyskeratosis and Aplastic Anaemia.
He has returned to Leongatha but home does not feel like home after so long living at the Royal Children’s Hospital in Melbourne.
His mum Elissa said, “For so long we have talked about going home and the things he can look forward to about going home, but because it was new to him, nothing is familiar to him in town.
“We can’t change it and we do not want to waste time by being depressed about it, and we just want to make the most of what we have.”
Doctors are now watching Elliot’s recovery from the second transplant, monitoring his organs, watching for signs of cancer and lung fibrosis, and other potential complications.
“It just takes the smallest little thing to upset everything,” Elissa said, adding the family has come close to losing Elliot many times.
“To look back now at everything that has happened, it is very overwhelming. Just seeing the boys playing together, you just burst into tears because we never thought they would have that time to be together.”
Given his low immunity, Elliot is unable to mix with children other than his brother Ashton, continues to receive food and water through a nose tube, and is taking a considerable amount of medication.
“The marrow is taking a lot of time to grow and we have to make sure he has all his electrolytes in balance,” Elissa said.
Elliot has become the face of the campaign to raise more funds for research into bone marrow failures.
On Friday, July 20, he will again run on to the ground at Etihad Stadium, Melbourne, for the AFL match between St Kilda and Richmond – the annual Maddie’s Match in support of Maddie Riewoldt’s Vision, a charity that raises funds and awareness for bone marrow failures.
The charity is named after the late Maddie Riewoldt, the sister of former St Kilda Football Club captain Nick Riewoldt, who died in 2015 as a result of Aplastic Anaemia.
Elliot ran on to the ground with Nick in front of 45,000 footy fans at the 2017 Maddie’s Match. This year, the Vanderland family will watch the match from a corporate box.
Nick said, “Elliot is now five years old and still going through so much every day. He is a hero in every sense of the word. The ongoing uncertainty for Elliot, his parents Ian and Elissa and Ashton is devastating.
“We urge everyone to get behind his family and attend this game as a sign of support in a very fragile road for families facing this disease.”
Nick chairs Maddie Riewoldt’s Vision, and with St Kilda Football Club forward Josh Bruce and Elliot, recently announced a $300,000 fundraising target for Maddie’s Match to match government support of an international travelling fellowship.
The target nominated will equal the Victorian Cancer Agency pledge to co-fund the international research position to find a cure for bone marrow failure.
This is the first time such an opportunity has been offered to connect researchers in Australia more strongly to the global network.
The Vanderland family faces another challenge also with Elliot’s brother Ashton having the same genetic condition and the possibility of needing a bone marrow transplant in the future also.
To commemorate Maddie’s Match, St Kilda players will wear purple strip guernseys in recognition of Maddie’s favourite colour.
To donate or learn more about Maddie Riewoldt’s Vision, visit www.mrv.org.au

Join the cause: Leongatha’s Elliot Vanderland (centre) will run on to the ground at Etihad Stadium, Melbourne, for the AFL match between St Kilda and Richmond on July 20,for the annual Maddie’s Match to raise awareness of bone marrow failure syndromes.
He is with St Kilda forward Josh Bruce (left) and former St Kilda captain Nick Riewoldt. Nick now chair’s Maddie Riewoldt’s Vision, a charity raising funds and awareness of the syndromes, and named after his late sister Maddie.

Short URL: https://thestar.com.au/?p=25385

Posted by on Jul 10 2018. Filed under Featured. You can follow any responses to this entry through the RSS 2.0. You can leave a response or trackback to this entry

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