"Her sunlight is like gold"

Madeleine Therese Sobb 21/11/1989 – 22/05/2015 Daughter, sister, partner, friend and disability advocate Margaret Sobb Where do I begin to the tell some of the story of our beautiful and amazing Madeleine?

"Her sunlight is like gold"

Twelve months have now passed in our lives without the physical presence of Madeleine. We hold onto the belief that she will always remain in our hearts and as part of our family forever. As one of Madeleine’s friend’s often remarks, “She continues pulling those strings from heaven and having an influence in our lives.”

Madeleine was born with an unusual bone disorder. From the very beginning she challenged the medical profession regarding her slow growth. Madeleine has continued to challenge the world on many fronts. She had extreme short stature which meant her physical world had to be adapted continually to meet her needs. To quote Madeleine, “People with disabilities are actually disabled by their environment. If you give us physical support, equipment, accessible buildings and transport, then we are able to have the same opportunities and make positive contributions to society just as any other Australian.” As you may have realised, Madeleine was a staunch advocate for people with disabilities.

As a family, we endeavoured to help enable Madeleine to have the opportunity to live a fulfilled and happy life, in whatever form that might take.

Madeleine attended pre-school and progressed to mainstream primary and secondary education within the Diocese of Maitland-Newcastle, obtaining her Higher School Certificate in 2007. While in primary school, Madeleine underwent spinal surgery which was successful; however, she required many months of recovery and absence from school. The staff and students of St Therese’s, New Lambton, provided much-needed support during Madeleine’s convalescence and eventual return to school. Frequently during her younger years she struggled through many respiratory illnesses, often requiring hospitalisation.

During Madeleine’s school years she enjoyed extra-curricular activities which included jazz ballet and horseriding with Riding for the Disabled (RDA), Raymond Terrace. Madeleine loved the feeling of freedom when riding a horse and being so tall! Dressage was one of her loves. Madeleine’s achievements at RDA saw her win many awards at State Dressage level.

After leaving school, Madeleine engaged in many endeavours and study including a Millinery Certificate and Design Fundamentals completed in 2008, followed by Small Business Management in 2009. In 2014 she attained a Bachelor of Applied Science in Disability Studies.

Madeleine displayed many qualities which included kindness and generosity of heart. From September 2009 until June 2010 Madeleine was the Intake Volunteer at Disability Advocacy NSW (Newcastle). Determination was exhibited when Mad Hatter Millinery opened. The business was established by Madeleine with assistance from her millinery friends as part of 'Renew Newcastle', which brings transitional buildings to life in the CBD.

In 2010 Madeleine informed us she was thinking about applying to undertake a Health Science degree in Disability Studies; however the course was only available in Melbourne and Adelaide.  Yes, in 2011 Madeleine moved to Melbourne!

Here she developed a full and wonderful life − making many friends, having fun, studying, building a career − she blossomed with independence. Madeleine and her partner Jarrod shared many happy times which included seeing the play Once. The title of this article is a lyric from the song “Gold”, by Glen Hansard from the play and movie.

I would like to quote the June 2015 Newsletter of the Youth Affairs Council of Victoria (the peak body and leading policy advocate on young people’s issues in Victoria).  

“On Friday, 22 May, 2015 we sadly lost our much loved friend and colleague Madeleine Sobb after a short illness.

Madeleine joined the Youth Disability Advocacy Service (YDAS) steering committee in 2011 and headed up the first ever National Youth Disability Conference in 2012 as the conference co-ordinator. This was a massive endeavour and demonstrated Madeleine’s impressive talents and her passion for raising youth and disability issues on a national stage.

She also became well-known for holding an Australian airline to account over their discriminatory practices towards people with disabilities with a disability discrimination complaint and a social media campaign that forced the airline to improve accessibility.

In 2014 Madeleine commenced her role as YDAS Project Officer at the Youth Affairs Council of Victoria as she completed her Bachelor of Applied Science in Disability Studies. In 2014, Madeleine also headed up the protest against the axing of ABC Ramp Up, a national platform for disability news and opinion which was edited by Madeleine’s close personal friend Stella Young.

Madeleine will be remembered as a fearless advocate for disability rights and her work to increase the social recognition and political representation of young people with disabilities. Her kindness and generosity to others was felt by all who knew her and she will be very sadly missed.”

Madeleine has two wonderful sisters, Emilie and Julia. The bond they share is immeasurable and unending. Life without Madeleine for them and for Tom and me is very difficult, however we give thanks for the gift of each other and our supportive family and friends.

Recently one of our friends wrote the following:

“She has done so many incredible things, been a wonderful friend, family member and grown into a very talented woman who wasn’t afraid to stand up for her beliefs. Even at the end she gave the ultimate gift to others.

There are so many aspects of Mad’s life that demonstrate the thoughtful, caring, adventurous and amazing woman she was. It seems fitting to continue to share her and her incredible life with others.”

On behalf of Madeleine, our family and Jarrod consented to organ donation. We have recently been informed that the recipient of Madeleine’s kidney is well and has returned to work. Madeleine’s generosity lives on.

We love you, we miss you, we admire you, we pray for you and we thank you for being you.

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The Aurora article "Her sunlight is like gold" first appeared on mnnews.today, your local source of Catholic news for Newcastle, Maitland and the Hunter Valley. Follow mnnews.today on Twitter and Instagram.

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