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Our Families
- Fundraising Target:
- $ 16,500.00
- Donations to Date:
- $ 11,719.00
Messages of Support
Team Bella
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Description
My name is Annabelle Susan Maguire I am 5 years old, you can call me Bella. I have a very rare Chromosomal abnormality called 16q24.3 Deletion Syndrome. I live with my Mum Cathy, Dad Greg and big sister Imogen. Pop over to my Facebook and LIKE Bella Maguire Support Page to follow my progress.
Mum and Dad's vision is for me to attend school next year with my sister. We are still working with the school to make sure that I am best supported.
When I was born I had trouble breathing and I turned blue, I spend the first five weeks of my life in the intensive care unit at the Royal Women's hospital in Brisbane. I was not able to breast feed or drink milk from a bottle and I was very floppy. I was then sent home with Mum to work things out. However things do not always work out.
Two weeks late I still could not feed or take milk from my bottle, and I was losing weight, so Mum and Dad took me to the Royal Children's hospital late one night very concerned.
I spent nearly the next 18 months in hospital with multiple and complicated medical issues. My development was delayed and I was fed via a tube in my nose. The doctors then decided that a more permanent feeding device was need, so a tube was surgically put into my tummy when I was only five months old. I received all my hydration and nutrition via this tube.
I have low muscle tone, and I have intellectual, physical, speech and language impairments. The continued support I need is very expensive. With no known diagnosis we are not eligible for the Governments Early Intervention Package which assists families with the high costs of therapy, equipment and aids.
The past 12 months I have been given the opportunity to have the best support and therapies a child with special needs requires. I still need lots of therapy and aids to support me and help me reach my full potential. Thanks to my friends, family, the community and business sponsorship I have made the most amazing progress. This has only been possible due to the generosity of donations.
Every Wednesday I attend Conductive Education Queensland which costs $75.00 per visit. My Occupational Therapist comes to my home fortnightly and this costs $150.00 per visit. As well as fortnightly visits to my Physiotherapist $70.00 and Speech Therapist $85.00. I not only have the high cost of therapy, I also need aids and equipment so I can learn at home. Mum and Dad from time to time need respite, and a break from the busy schedule that we have. This year I hope to join The Girl Guides and have a support worker come along!
To explain what my therapist helps me with here is a guide:
Conductive Education is different from a treatment model as it aims to teach – how to move, how to learn, how to take responsibility for self, how to be an active participant in the learning process, how to develop the skills necessary to function in the community - how to live. Conductive Education is a holistic system of education. All aspects of development – physical, cognitive, social and emotional are fostered through carefully-planned, well-structured series of programs which are integrated into a meaningful whole. No area of need is provided for in isolation.
Physiotherapy helps me to develop strength and co-ordination, motor development, posture and balance, quality of movement and function. Physiotherapists aim to improve the quality of life of children and young people by promoting independence and encouraging physical fitness and wellbeing.
Speech Therapy helps with skills such as oral feeding, and swallowing as well as exercises, including facial massage and various tongue, lip, and jaw exercises, to strengthen the muscles of the mouth. She also works with different food textures and temperatures to increase Bella's oral awareness during eating and swallowing. As well as the ability to help her speak, listen and take direction.
Occupational Therapy differs from my health and social care professionals. The focus is not so much on the problem itself but on how it affects my ability to do normal every day activities. For me this could mean helping me to be independent when I am getting dressed, learning, using the bath and helping me to use the toilet, and carrying out practical activities at school and at home.
Ways you can help:
Attend Riverwalk and collect donations.
Make a donation online.
Send this page to your family and friends.
Pop over to my page on Facebook and LIKE.
For those who choose to, any donation of $2 and over is tax deductible.
Please feel free to contact Mum or Dad at go.team.bella@hotmail.com or Cathy on 0411 028 327.
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