Our Families

Team Bella

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Description

My name is Annabelle Susan Maguire I am 4 years old, however I am known to all as Bella. I Live with my Mum Cathy, Dad Greg and big sister Imogen.

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 very 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 wen i was only five months old. I received all my hydration and nutrition via this tube.

After may hours and tears of early intervention and various therapies I have made fantastic progress, I can now eat some things orally and can drink from a sippy cup. My speech is coming along, as well as gross and fine motor skills. However I still need lots of therapy to help support me and help me reach my full potential.

My team of doctors at not yet able to give an explanation to my Mum and Dad about what has gone wrong with my brain, or why my development is delayed, but what matters most is that my family is able to continue to support and assist me in reaching my full potential.

Mum and Dad's vision is for me to attend the school where my big sister Imogen attends as independently as possible with the appropriate support.

I need fortnightly Physiotherapy, Speech therapy, Occupational therapy, assistance with medical expenses, and would like to seek an evaluation from Ian Hunter who is a developmental therapist with over 35 years experience in providing development programs for children with developmental disability and brain injury. I will also need extra support and equipment when I start school in 18 months time.

The continued support I need is very expensive.To help my friends and supporters know exactly how much my therapies and special needs costs and what these involve. Here is a brief rundown.

Therapies $3515 per year.

Physiotherapy: 19 Session per year at $65.00 per visit.

Speech therapy: 19 Sessions per year at $60.00 per visit.

Occupational Therapy: 19 Sessions per year at $60.00 per visit.

Medical Costs: $2500.00 per year

Educational needs in reediness for School in January 2011 will be $5000.00.

Personal cares: $250.00 (Keeping a spare Button (feeding tube) in case mine falls out and the hospital does not have one in my size) It has happened before!

Respite: $800.00 per year.

Equipment and Aids $920.00 per year.

Neurodevelopment programme: $1200.00.

How do my therapist help me me to learn?

My physiotherapist 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 well being.

My speech Therapist 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 a Bella's oral awareness during eating and swallowing. As well as the ability to help her speak,listen and take direction.

My Occupational Therapist differs from my health and social care professionals. Her 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, learing, using the bath and hleping me to use the toilet, and carrying out practical activities at school and at home.

For children like me the government gives very little support. We are not able to access services from a particular group as we do not have a diagnosis. To help Mum and Dad's vision and for me to reach my full potential, this is how you could help.

Attend the Riverwalk and collect donations.

Make a donation online.

Attend Terry and Sue Waterer's Auction night Saturday 9th October at 2pm .

Enjoy an afternoon High Tea Party at Bella's Mums home. Sunday 14th November at 2pm.

Send this page to your family and friends.

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 028327.