Little Ellie McCloskey is literally one of three in a million.
The Belmont six-year-old is battling a rare disorder – Juvenile Myositis.
Now her family is reaching out to others with the disease.
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Little Ellie McCloskey is literally one of three in a million.
The Belmont six-year-old is battling a rare disorder – Juvenile Myositis.
Now her family is reaching out to others with the disease.
Thank you for sharing Ellie’s story! My 6yr old son also has JDM and raising awareness is critical so that future families can get a diagnosis before permanent damage is done!
Last year The Myositis Association Australia expanded to include the JM Joey’s, we were reaching overseas for support and to be connected with other kids fighting JM.
It is certainly challenging managing a child with JM and it affects the whole family.
We need understanding and compassion from our communities to keep our children well.
They are treated with chemotherapy and other drugs to suppress their over active immune systems and this leaves them vulnerable to infection. We need people to be cautious and report contagious illness to the school/preschool, so we can try and prevent our already sick kids from getting sicker.
And we need some understanding and consideration as we hide from UV exposure. It is unbelievably difficult to avoid the sun. It means living like vampires. And very isolating. And heart wrenching watching our kids devastated emotionally having to be spectators in their lives.
Thank you again for doing such a wonderful job putting this story together. JM Is a complicated and invisible monster that has stolen so much from our children. Explaining it in a few short minutes is not an easy thing to do, but you managed to do it.
Mrs N. Stas.
JM Joey’s Director
The Myositis Association Australia Inc.
Thank you NBN,Ellie and her family for assisting to raise awareness for myositis,
All connected with the The Myositis Association of Australia, and the Joeys sub-group know the struggle to obtain a diagnosis, the search for effective treatment regimes and the need for tolerance from others due to the physical effects.
The Myositis community is encouraged when others show interest and willingness to assist with awareness raising for our rare disease.
Thankyou again.
Thank you for showing this story so well, Ellie is an amazing little girl and her family are extraordinary people. It really is a privilege to know them.
My Nephew is also a sufferer of JDM, Aimee, Ellie and have been great support to my sister and my Nephew. I’m sure they feel the same.
Your program has managed to reach other sufferers that have been alone for so long. Its fantastic that you have created awareness and not only so other families are no longer alone and can get some support but hopefully someday someone will find a cure for this horrible disease.
Thanks again.
Many thanks for the coverage of this story. I know only too well the daily struggles this family and others like the McCloskey’s face. It’s one of those diseases you can’t take on face value as the kid you see playing and laughing like any 6 year old at the park doesn’t look sick, but behind closed doors its that kid that is now crying on the way home because it hurts to breathe, or can’t get herself in and out of bed later that evening as a result of fatigue and inflammation. More concerning is that these kids learn basic daily tasks such as counting and days of the week by how much and which medications are required on that particular day.
Aimee and Niele (the co founder of the JM Joeys) work tirelessly together without giving it a second thought to raise awareness and provide the much needed support for fellow sufferers. Sometimes I’m sure it feels as though they are going around in circles with no end in sight but the airing of Ellie’s story has given these incredible ladies hope. For one of the first times they have been heard and I know that means the world to both of them.
Fingers crossed this is just the beginning of awareness in the public arena and the start of many positives to come.
Thanks again for your support NBN.