“At the time that Brodie was born, there were only three other known cases of OHDO in the world.”
Melinda and her husband Andrew live in rural NSW and are the parents of three children. Their middle child, Brodie has a rare condition called OHDO Syndrome, which is characterized by intellectual disability, distinctive facial features, and abnormalities affecting other parts of the body and joint problems.
Melinda explains that nothing was picked up during her pregnancy, and there were no genetic issues on either her or her husband’s side that knowingly caused Brodie’s disability.
“They sent us home after ten days and told us that he probably wouldn’t survive more than the first month. And here we are now, going on 21 years.” – Melinda
When Brodie is not in his wheelchair, he likes to get around the house by shuffling around on his bottom. Due to his vision impairment his parents are unsure of how much he can see, however he doesn’t run into furniture and recognizes the difference between his carers. He loves going to hydrotherapy and the feeling of freedom he gets in the water. He also likes toys that have lights and sound, or a cause and effect relationships and enjoys listening to music.
Despite his disability, Melinda believes that Brodie has an understanding of what is going on.
“We talk to him exactly the same as we do our other children. Brodie likes to be outside and have his freedom to explore his surroundings, we live on acreage so he loves being outside in the fresh air and sitting on the grass on the back lawn.” – Melinda
In a rural town, access to services and respite can be much more difficult for families who are caring for a loved one with a disability. Brodie’s family have fought for the inclusion of people with disability in the day programs offered in a nearby town, which allow for Brodie to go out every day amongst other people he went to school with. Without this, he would be isolated at home and not included in the community.
Due to the lack of age-appropriate and suitable disability housing, the family’s number one priority is to be able to keep Brodie at home for as long as possible. Through the At Home Care Grants, Melinda was able to apply for an iPad and new flooring.
“The funding came at the best time. With Brodie getting that much older, our other son also going through mental health issues and what we’re going through as a family, it played a big part. We’re on one income and have been for some time, because it’s hard for us both to work and look after Brodie, so it can be hard to make ends meet.” – Melinda
The iPad has already provided Brodie with stimulation and entertainment through its various games, music, and movies and the flooring will ensure that Brodie can continue to enjoy playing in his room on a hygienic and easy to clean surface. It will also allow for all of his equipment to be stored and maneuvered within his room, which will reduce the risk of injury for his parents and carers.
“Brodie is our son and he deserves to be loved and stay at home as long as he can, however long that shall be. Just as we all deserve to stay at home for as long as we can. Home is where the love is and like I say, he didn’t ask to be born with this disability.” – Melinda
The funding is imperative for families, just like Melinda’s, to make changes that will keep their loved ones at home, and keep their families and carers safe from carer burnout and injury. It is also important to allow Brodie to live a young life, and to continue to live with choice and independence.
“People and organisations need to know how something so small can change someone’s life and have a huge effect on someone’s life. Keep up the good work, because without the support from you, it would be impossible to deal with everyday life. It does change the whole family because it’s an overflow effect, it effects everyone involved. The family, the carers, and everyone. We feel like we won the lotto – thank you!” – Melinda & Andrew