Mamamia Cares: Calling for a marathon effort to provide age-appropriate care.

“Imagine a 20-year-old in aged-care, the youngest there by 50 or 60 years. No peers, and no age-specific treatment…. The music playing over the loudspeakers isn’t Coldplay, it’s Hoagy Carmichael…”

What did you do for your 20th birthday? Did you have a brunch with your family? Did you have dinner with friends? Maybe you went out for a drink, and a dance. After all, everyone keeps telling you, ‘you’re in the prime of your life.’

James Macready-Bryan was in the prime of his.

In 2006, on James’ 20th birthday, he and a friend were out in Melbourne’s CBD. It was supposed to be a night of celebration for a promising, young arts-law student. After a casual comment escalated into an attack, James suffered a catastrophic brain injury, leaving him permanently disabled. The incident took away his ability to speak, walk, eat and see. Because James’ injury was not a result of a motor vehicle or workplace accident, he had no automatic right to financial aid. Faced with the devastating reality of James’ need for ongoing care, his friends and family established the James Macready-Bryan Foundation (JMBF).

“The focus was on getting more age appropriate care facilities,” Sharon Kent, JMBF’s Communications Manager, explains. JMBF was involved in the funding, planning and development of a high-care facility, catering specifically to young people. The foundation also accepts applications for financial assistance, for rehabilitation and home modifications. “It’s particularly good to be able to do that if it means the difference between them being able to stay at home or having to go into a nursing home.”

Imagine a 20-year-old in aged-care, the youngest there by 50 or 60 years. No peers, and no age-specific treatment. If, like James, they are unable to engage with those around them due to their disability, they are even further isolated. The music playing over the loudspeakers isn’t Coldplay, it’s Hoagy Carmichael.

It is a distressing thought, but as aged-care placement consultant Karen Orrin knows, it happens far too often. “In an ideal world, they wouldn’t be in an aged-care facility…It’s very difficult. Because… a lot of them really need a lot of care.” Orrin believes aged-care can be detrimental to the treatment of young people. ”The whole environment is geared towards old people. So, even for someone who’s got a really bad brain injury…I think over time… It would have a negative affect.”

In her 35 years as a nurse, Orrin witnessed first-hand the toll it takes on families. “They’re there an awful lot,” she says. “Because they want to be there. It’s tragic. It’s dreadfully upsetting for a family to deal with the reality, that’s where their family member is going to be… for however long they live.”

While James is fortunate enough to be in age appropriate care, his family still intimately feel the pain of his injury. “It’s devastating. Absolutely devastating… It doesn’t finish. There is no closure, it just goes on, and on, and on, and on,” says James’ father Andrew Macready-Bryan.

Approximately 1/45 Australian’s suffer some level of disability as a result of acquired brain injury. There are 73,000 Victorians living with ABIs, two out of three obtaining their injuries before the age of 25. As a result, more than 6,700 young people are forced to live in aged-care facilities because there are no viable alternatives.

Those alternatives are exactly what Macready-Bryan family hope to provide, and the Melbourne Marathon is an important step towards achieving that.

“We have a special connection to the marathon,” says Andrew Macready-Bryan, “It quite often falls on the first or second week of October. James’ birthday is the 13th, and that’s the day he was hurt.”

This year, the marathon will take place on the 18th of October. “The marathon is probably our biggest fundraiser.” The event also plays a positive social role; “The feedback we’ve had is that people often struggle to find ways to give back to the community, but [the marathon] is just, ‘Wow. What a brilliant day.’ Watching the athletes, and watching the spirit of human persistence.”

“We are committed to providing 270 volunteers,” says Kent. For every volunteer JMBF provides on race day, the Melbourne Marathon donates $100 to the foundation. “That’s $27,000. With that we can support a number of people who suffer with an ABI, for a number of purposes.”

“The marathon is key for us to be able to help other people,” says Andrew Macready-Bryan

For James’ family and friends, the heart-breaking reality is it all could have been avoided.

“Unfortunately, we live in a society that is really focused on blame and punishment. More energy goes into that than it does into prevention, stopping this sort of thing from happening again.” It is a frustrating battle, but the level of support the foundation and the family has received over the past nine years has touched James’ step-mum, Annette Rome. “This has brought out a side of people, especially young people, that is just extraordinary.”

If you would like to volunteer with the James Macready-Bryan Foundation, or run as a part of team JMBF at this year’s Melbourne Marathon, you can contact info@jmbfoundation.org.au.vAlternatively, you can visit jmbfoundation.org.au for more information.

You can also follow JMBF on Facebook and Twitter.