Hello my name is Brandi and I am the new Qld State Representative. I can still remember the day when Osteogenesis Imperfecta became a part of my daily vocabulary. I am a mum to identical twin boys that were born prematurely at 26+3 weeks and on day 3 one of them had a pulmonary haemorrhage. Now getting a phone call from the NICU in the middle of the night is scary but then when they tell you they found healed rib fractures, it is a lot to take in. I didn’t understand how that could happen as I didn’t have any falls and had a relatively uneventful pregnancy, minus the early birth. I was then informed that they also found healed fractures in my other son. It was very overwhelming.
From that day on specialist would visit and mention Osteogenesis Imperfecta. In the beginning I would just say OI or brittle bones as I just couldn’t pronounce Osteogenesis Imperfecta, I can still remember the cheeky grin our neonatologist would give me when I would attempt to pronounce it, he was lucky I liked him! And I can admit, I didn’t know much about OI and as a new mum I was scared. I was unsure what the future would hold for them but also for us as a new family. I had a lot of questions; would they walk, what did treatment look like, was there treatment, how would I know what to when they fractured and I had twins, how were we going to cope.
It has been the support of the OI community and friends that I have made that have helped me to learn more about OI, helped me to learn that everyone with OI is different, that there are varying degrees of OI and to trust my mummy instincts. I also learned that OI is a genetic disorder that you either inherit it or that it can be spontaneous mutation. It is not a lack of calcium in the diet – as I’m sure many of us have heard someone say, “Oh do they not drink enough milk” and there is no cure for OI but there are treatments to help prevent or control the symptoms of OI.
Now that I’m starting to come out of the mummy fog, my boys are almost 3 years old, I want to be able to give back to the community that has supported me. I want to help connect, support and bring awareness to the community and other families that are just starting out on their OI journey or have been on it for a while.
I am originally from Denver Colorado but fell in love with an Australian from Armidale. We now live in Brisbane with our twin boys and furbaby cat. I look forward to being the Qld State Representative!
Contact: Brandi firstname.lastname@example.org
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City of Brisbane Accessibility map
As much of the data included as part of the City of Brisbane accessibility map has been obtained from other agencies, The OI Society of Australia cannot guarantee that information contained in the accessibility map is comprehensive and up to date. The information in the accessibility map is for informational purposes only and is not suitable for legal, engineering or survey purposes.
If you have a disability and a lifelong need for ‘attendant care support’ in order to participate in community activities and attend venues, the Companion Card can help you with the costs of getting out and about with the support of a companion.
Companion Card holders receive a second ‘companion’ ticket at no charge at participating venues and on public transport. The ‘companion’ ticket is also exempt from booking fees.
The Companion Card is issued in the name of the person who has a disability, and is valid for 5 years.
A companion is any person who accompanies a cardholder and provides attendant care support. The cardholder’s chosen companion may be a paid or unpaid assistant or carer, family member, friend or partner. More info:- Queensland Government Companion Card
Aids and equipment for community access (CAEATI)
The Community Aids, Equipment and Assistive Technologies Initiative (CAEATI) helps people with a disability participate in their communities by providing subsidy funding for a range of aids, equipment and assistive technologies. More info:- Community Access (CAEATI)
Medical Aids Subsidy Scheme (MASS)
The Medical Aids Subsidy Scheme (MASS) provides funding for medical aids and equipment to eligible Queensland residents who have a permanent and stabilised condition or a disability. The scheme helps people to live at home and avoid early or inappropriate residential care or hospitalisation.More info:- Medical Aids Subsidy Scheme (MASS)
Vehicle purchase and modification (VOSS)
The Vehicle Options Subsidy Scheme (VOSS) enables people with a disability, their families and carers to participate further in their community by providing a package of funding options to meet their vehicular access needs.More info:- Vehicle Options Subsidy Scheme (VOSS)
Disability, access and inclusion
Visit Brisbane City Council’s Disability, access and inclusion website to find out about braille trails, accessible community halls, libraries and parklands. More info:- Disability, access and inclusion
Queensland People with disability
Visit Queensland Government People with disability website, to find out about Support for families, carers and friends, Getting out and about, Legal information and your rights, For Community Care providers. More info:- Queensland People with disability
Before acting on any advice on this website you should obtain appropriate independent or professional advice before any action or decision is taken on the basis of any material on this website……….read more