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Thank You

24/9/2018

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Shortly after Mia died a GoFundMe page was set up to accept donations in lieu of flowers and to recognise the charities that supported Mia throughout her life.
We have been overwhelmed by all our friends near and far who have so generously donated. Thank you to everyone who made donations in Mia's name, it is lovely to be able to help these charities that carry out such important work and positively contributed to Mia's life. Below is some more detailed information about each of the charities. We plan to close down the fundraising page in the next month or so and organise cheques for each of the charities. 

We feel very proud to be able to recognize the charities that supported Mia’s joyful life. All monies collected will be distributed to the charities described below. 
  • Bear Cottage
  • Riding For Disabled 
  • Guide Dogs
  • Batten Disease Support and Research Association

Bear Cottage
​
www.bearcottage.chw.edu.au

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Bear Cottage is the only children’s hospice in New South Wales. Bear Cottage provides support, respite and end-of-life care for children with life-limiting conditions and their families, in a warm homelike environment. Caring for a child with a life-limiting condition changes a family’s life forever. Exhausting, rewarding, sometimes positive, often painful. Bear Cottage is a place where respite is possible.
Bear Cottage provides excellence in paediatric palliative care 24 hours a day, and is affiliated with The Sydney Children's Hospitals Network which means they have access to some of the best medical resources in the world. As we live very close by to Bear Cottage we were able to fulfil our desire for Mia to receive end of life care at home with the support of the nurses and staff from Bear Cottage.

Riding for Disabled

​www.rdaryde.org.au

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The Riding for the Disabled Association NSW is a non-profit organisation which enables children and adults with disabilities to enjoy and achieve physical, social, psychological and educational progress through participation in therapeutic horse riding programs and horse related activities.
The Ryde Centre where Mia participated in horse riding is run entirely by volunteers. Riding for Disabled rely on the generosity of individuals, grants, community groups, local businesses and fundraising to raise the funds required for day to day running expenses for the centre.  This includes activities and programs for disabled riders and paying for horse related expenses such as vets, farriers and feed bills.

Guide Dogs
​
www.guidedogs.com.au

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Shorty after Mia’s diagnosis she was given a therapy dog called Bon Bon (pictured) by the Guide Dogs. Guide Dogs NSW/ACT is the leading provider of Guide Dogs and orientation and mobility services that enable people with impaired vision to get around their communities safely and independently.

When most people think of the organisation, they generally think of Guide Dogs. But a Guide Dog is just one of the ways in which they support the community. 

​Guide Dogs NSW/ACT also provides a variety of support services such as the Pets As Therapy (PAT) Program to assist those whom experience behavioural, emotional and mental health conditions, physical disabilities, or isolation caused by age or illness.
Therapy Dogs can improve quality of life by reducing anxiety, increasing physical activity, a sense of community and well- being, encouraging routine and commitment, and of course providing non-judgemental and unwavering friendship.
The PAT Program as well as all Guide Dogs NSW/ACT services are provided at no cost to clients.  Guide Dogs are financially dependent on the generosity of the community to allow them to continue to help more people.

Batten Disease Support and Research Association 
​

www.battens.org.au​

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BDSRA Australia is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. It was founded in 1995, by parents seeking to build a network for those diagnosed with Batten disease.
Batten disease (Neuronal Ceroid Lipofuscinoses) (which affected MIa) is an inherited disorder of the nervous system that usually manifests itself in childhood.Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills.  Children become totally disabled and eventually die. 

BDSRA believes that to effectively unravel the mysteries of Batten disease, the worlds of medical science, research, and families must work together toward a common goal: discover treatments and cures while assuring a better quality of life for those living with the disease.

This Association is a registered charity and is operated entirely by volunteers with no Government funding.


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    Stories of our love, heartache and friendship. Written by a mother.

    ​Our family is dedicated to raising awareness for Batten Disease. Batten Disease is a rare degenerative genetic disease that affects otherwise healthy children who can sing, dance and bounce. From a young age affected kids start to lose their ability to walk, talk, see and smile. There is no cure for children affected and it will eventually take their lives. Awareness and research into this rare disease is imperative to find a cure.

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