Stories - BrAshA-T, Brisbane, Australia

Stories

The Roebig Family (2007)

My name is Kristine Roebig and my husband Sean and I have 3 children. Stacey who is 7 years old, followed by Brady who is 3 years old and Ashleigh who is 2 years old. Our two youngest children were diagnosed on the 1st February 2007 with a disease called Ataxia-Telangiectasia.

For your information the following is our family’s story………

When Brady was about 14 months old we began to notice that his stumbling was not consistent with other children of a similar age. We had a referral to a Paediatrician who ran a series of blood tests and an MRI scan of the brain under general anesthetic. Within two weeks Brady was taken to the Emergency Room at St Andrews Hospital. He was discharged three days later and then re-admitted 3 days after this with pneumonia.

Brady was started on daily steroid treatment and lots of other medication. This was the course we followed for the next 12 months, repeated pneumonia and admissions to hospital. I

n October 2006, Brady was referred to the Royal Brisbane Children’s Hospital. Brady had a broncosopy and CT scan of his full chest. On results of this testing doctors were astounded by the state of Brady’s lungs and the damage that had been done. He started on a drug called azithromycin for long term use. Along with the other symptoms Brady presented with, referrals to other specialists were made and more tests ordered.

On the 1st February 2007 we were given the diagnosis of Ataxia-Telangiectasia. 7 days later Brady had his first immunoglobulin transfusion. His little body does not produce anti-bodies so he will have to have these transfusions every 28 days for life.

Then we were asked the question of how are your other children. We answered that Ashleigh stumbles too. Ashleigh went through the same testing process as Brady and had the same results. She has not started having the immune problems yet that Brady has.

Having two children with such a terrifying disease has brought many life changes throughout our family. The added financial / emotional strain is very difficult added to the stress of a diagnosis of this kind.

As AtaxiaTelangiectasia is such a rare disease, (approx 40) diagnosed children in Australia, families feel very isolated and alone. Our goal is to change this for families and let them know they are not alone and someone is fighting for their children’s future. As there is no support of this kind available, all children with A-T including Brady and Ashleigh need our help.

Sean Roebig

27 Nov 1960 – 22 Jan 2011

Sadly Sean Roebig, one of BrAshA-T’s founding members, loving husband to Krissy and devoted father to Josh, Stacey, Brady and Ashleigh passed away on the 22nd of January 2011.

I wish we could have found a cure for A-T in Sean’s life time but I will continue to push ahead for a cure in Brady and Ashleigh’s life time. BrAshA-T is a legacy that Sean has left behind to be continued…

Life is going to be very hard without Sean in it. Raising kids alone is going to be hard. Running the foundation is going to be hard. Going back to work in my shop is going to be hard. Having two sick kids with a disability is going to be hard. Getting them to start school for the year is going to be hard. Smiling again is going to be hard…

BUT as hard as all of these things will be it will happen because Sean had faith in me from the day he met me. He loved me. We will be ok…

Krissy Roebig


Ely is the BrAshA-T Fundraising Queen!

In 2013, for the second year running, very talented artist and A-T sufferer, Ely, has taken the title of Fundraising Queen with her painting, Alegria (meaning “happiness”), fetching a staggering $4,500 at the live auction at the Brisbane Cocktail Evening on Saturday night.  Congratulations Ely!

Ely was 23 years old at the time and took a total of 3 months to complete the painting.

Ely’s 2012 painting sold for a record setting $9,000 at last year’s Brisbane Gala Charity Dinner.

Click here to see Ely and her mother, Sandra, on the SBS program, Insight, in 2012.

Click here to see Ely featured in the Winter 2017 edition of the UQ Medicine magazine.


Mia

Watch the video to hear Mia’s story…


Mark Thorpe

My name is Mark and I am 25 years old (2013).

I live in sale, Victoria and go to George Gray Centre 5 days a week which is an Adult Learning Centre.

I have my own yacht called WaterMark. I was in the Special Olympics for my sailing in 2010 and came home with a bronze.

Last year in 2012 I sailed in the World Sailing Championship and had great results. l like sailing and it has taken me all around Australia for competitions. I am very proud of my trophies.

I have just came back from going on a tall ship. I went from Melbourne to Hobart on the Lord Nelson Ship for 10 days and enjoyed the voyage and want to do it all again. Mum & dad came and picked me up and we went home on the Spirt of Tasmania.

On the holidays I went to the snow and went on a ski chair. I went to a come-and-try kayak day. I am always happy. I go to the gym. When I was little I went on lots of camping trips and stayed in tents with my family and now we have a caravan.

Mark

Mark’s magic moment at the Special Olympics by Mark Thorpe


Aaron

Aaron Jordan and his family worked hard to get the word out about A-T by trying to attract the attention of US talk show host Ellen DeGeneres during her recent visit to Australia.

The family posted this photo on facebook which has attracted over 54,000 likes. The story has also featured on media outlets right across the country!

Jordan’s mum, Brenda has been overwhelmed by the response. “There has been nothing but amazing feedback from all of this. We want to help create awareness for A-T and try our best to get Ellen’s attention and hopefully bring on lots of support for BrAshA-T and support for our A-T families. It has the possibility to raise a lot of money for research. That’s what we are praying for.”

Aaron’s sister, Chloe, and Brisbane Royal Children’s Hospital neurologist, Kate Sinclair, also helped the cause by preparing a YouTube video (see below).

Update from Brenda after Ellen’s visit: We ended up flying to Melbourne and did meet Ellen! All of the information on A-T that I had passed onto her she did receive and told me that herself.

She was very aware of us and knew that we were at her show on Tuesday. We met her on the morning she was flying out.

Her main security guard told me that on Tuesday night he noticed that she had our info card in her hand back at her room (pretty happy about that!).

So she did meet Aaron and apologised for not having more time to spend but did stop for photos to be taken.

She was very nice and I’m hoping with everything she has on A-T that we hear from her in the future. I do believe there is a chance, especially with Ben Affleck and Jennifer Garner being involved in the USA with the A-T Children’s Project.

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