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My Name Is Maya

Story: Redcliffe Guide
Published On : Sep 01, 2016
My Name Is Maya
My name is Maya. I am 11 years old. I have had a really busy 11 years spending a lot of time in hospital. I have a syndrome called Velo Cardio Facial Syndrome. It means I am missing part of my 22 chromosome pair in my genetic makeup. Sadly the tiny bit missing has meant I have a lot of medical conditions and disabilities. I need oxygen tubes to help me breath. I need a tube to feed me and a special long term central line drip in my chest so mummy can give me continuous medications and nutrition via my drip. I need special catheters to help me wee. My bowel is on the outside of my tummy as well. I use a wheelchair for mobility because I am an incomplete paraplegic. I have shunts in my brain and my back and spinal rods to keep my back straight. I have had 102 major surgeries since I was born. I have lots and lots of medications because I have medical conditions such as epilepsy and adrenal insufficiency, as well as stage end brain stem failure. The doctors have told mummy I am now considered palliative care meaning I will not live to be an adult. I love to watch the Wiggles and Tellytubbies, do art and craft, music therapy and spend time with my family.

The cost of caring for me, given my many medical issues and disabilities far outweighs my mummy's carer payment as a sole carer.  Every year we fundraise to meet my basic medical, therapy and equipment costs that are not covered by any government funding.  This year is no different. Please help my mummy with our next fundraiser:

Cent Auction For Maya

Saturday, October 15TH 2016

Redcliffe Senior Citizens Hall

401 Oxley Ave, REDCLIFFE 4120

TIME: 9.30am for a 10.30 am start

ENTRY: $5 including morning tea and lucky door prizes

TICKETS: $1 sheet

GREAT PRIZES ¢ BRING YOUR FRIENDS ¢ BOOK A TABLE

MORE INFO: Call Karen 0408 342 044

www.developingfoundation.org.au/family/maya

or www.facebook.com/mayasmates