Understanding Wolf-Hirschhorn syndrome
Olivia with her son, Elliott.
A group of friends have banded together with an online grassroots campaign to help their friend Olivia Sheen win a competition on behalf of her and her son, Elliott.
Elliott has Wolf-Hirschhorn syndrome, a genetic disorder that arises from chromosomal deletion. For most it means reduced growth, intellectual disability, seizures, heart defects and distinctive facial features. To everyone who knows Elliott, he is more than the sum of his symptoms. As Olivia says, “He’s the most divine little soul in the whole world, and a lot of people respond to that hence. He’s not defined by his disabilities, he’s just a special soul.”
Elliott's eyes light up around friends and he flashes a delighted smile. To see him instantly inspires a need to sweep him up into your harms and blow raspberries into his neck.
Elliott (front) with his very good mate Ryley who also has WHS.
Though unable to walk or talk, he is a happy child who loves rough and tumble, airplanes and a little wrestle. He’s become obsessed with books has just taught himself to turn pages of books so he can fit in yet another perusal of ‘Where is the Green Sheep’.
When Elliott was born, he and Olivia did not receive the greatest care in hospital. Olivia was told Elliott was “abnormal” or “had a use-by date of six months” by Canberra specialists and wouldn’t survive. Thankfully, they both persisted and now, aged seven, Elliot weighs 13 kilos and attends school.
The campaign arose because Olivia’s current car is too small and cannot be modified to hold a wheelchair. Most of her time is spent transporting Elliott to school or a myriad of specialist appointments. The act of hunching down, lifting and awkwardly strapping Elliott into his car seat is damaging her back. Having an accessible car is essential as Olivia has to drive Elliott everywhere.
“People are really helping”, Olivia says, “they can see this is a need and not a want. I don’t need this for a holiday in the Kimberleys: I need this to get to A to B with my son. And it’s been so lovely, and we know we’re not alone”.
The success of the campaign has surprised her. “When I created that page, I thought it would get to my friends and their friends. I am amazed, certainly by the community spirit and that people want to be a part of this, and that they can see they are helping. People have messaged me to let me know they care and are inspired. So car or no car, I’ve already won.”
The grass roots social media campaigning for the car vote has enlightening and positive for them both. “It helps having people on our side,” Olivia says, “I’ve had people say he’s a burden and waste of their time. It taught me that in fact what they say isn’t necessarily true.”
The costs of being a single mother and caring for Elliott are huge. Equipment like wheelchairs and walkers and modified car seats are prohibitively expensive and accessing help from government departments can be fraught with frustrating bureaucracy.
This trap is exacerbated by living within one of inner city Melbourne’s sprawling Housing Commission estates. For many of the disadvantaged people living within, life is often mottled with alcohol, drugs and violence. For Olivia and Elliott, it is a stable home that comes with challenges.
One challenge was when they discovered their school bus refused to pick Elliott up from home. For over a year, Olivia and her school have been battling the Department of Education to pick Elliott up via the school bus. The Department stated that, because their home was on the other side of the road, it was the outside of the school zone. Rather than take the 5 minutes (at best) to pick Elliott up on the side of the road, they have refused. So Olivia’s time is spent driving her son from Carlton to Balwyn, which has a school that is not only accessible but has experienced teachers.
Olivia provides all the support and care for Elliott, though she does get help from her support network of friends and family. But this does not cover the difficulties in trying to maintain a career or even a sense of independence when placed within a poverty trap for full time carers.
“I like to work, I like to be in the community but I can’t commit to a job because I often don’t have the time", she says. Olivia does try to supplement her income by making jewelry from home but often this time is taken up with driving Elliott around or negotiating with various departments to get fair treatment for her son. She hopes the NDIS will alleviate some of the financial strain.
Olivia has fought for Elliott from the early days in the NICU to today. “All these little things have just made me stronger. He keeps me going and pushing – he’s an absolute delight. I don’t know how long he’ll be here – he’s worth all of it. And I’m not going to let anyone tell me he’s not worth it.“
She is a huge fan of the Children’s Hospital in Melbourne. ”They respect him as a person. They don’t define him by his disabilities. They treat him as a patient and person.
“I just want the community to see people with disabilities as people and members of their community. We’re a large part of the community but we’re a forgotten part of the community, too”.
How you can help
Vote for Olivia and Elliot to win a car.
Voting for the chance to win the car ends this weekend. If you want to reach out and let Olivia and Elliot know you care, please visit their Facebook page or vote for their competition entry.
Donate to 4P Aussie Kidz
You can donate to this group, who help to raise and distribute funds to families dealing with Wolf Hirschhorn Syndrome. When wheelchairs can cost $9,000 and only $2000 is offered by the government to cover costs, 4P Aussie Kidz help create a supportive and caring community Australian families.