Bailey

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A beautiful boy with a smile that melts the hearts of all those who meet him and a cheekiness that is unmatched. The courage and determination of both Bailey and his wonderful family has been an inspiration to all of us who know them. It is through them that we have learned to truly appreciate and treasure our lives, our families and the amazing friends that help make us who we are.

… and here is his story

by Tiffany Heddes (Mum)

Like most 3 year olds, our little boy is full of questions. Why can’t I walk or run? Why do I have to go to hospital all the time? Whydo I need a machine to help me breath at night? Why can’t I lift my arms to itch my nose or brush my hair? These are heartbreaking questions but they are the simple reality of our everyday lives.

Bailey is our second born son and was born with a rare and severe type of Muscular Dystrophy known as Congenital Muscular Dystrophy Merosin Deficiency. Muscular Dystrophy is relatively prevalent in our society however peopledo not know a lot about this disease. It does not have a high profile, yet it affects so many, young and old, within our communities. It is a devastating disease, a disease for which there is no known cure.

Bailey is an extremely bright, intelligent little boy who has a real zest for life. He simply is living in an extremely weak body. He has a kind nature and wonderful personality. He touches the hearts of those that he meets. He is your typical boy and loves nothing more than zooming around the house in his powerchair trying to run the cat over! I am amazed that our dear old cat is still alive, but as Bailey says “don’t worry Mum he has nine lives”! Bailey and his brother Sam love to play hide n’ seek, chase and all those normal childhood games, including sport. Despite the fact that Bailey is in a powerchair we always work out a way for him to be included. This is very important to us, and we strive to do the “normal” family things, just lots of planning and thinking are needed at times.

Bailey spends much of his life in hospital with respiratory problems. Just recently he was airlifted (for the second time) to the Mater Children’s Hospital Intensive Care Unit in Brisbane with a double pneumonia. He lay critically ill on life support for the first week. The doctors gave us little hope. I can not begin to explain the emotions that you go through and the helplessness that you feel when all you can do is sit and hold your son’s little hand and pray that he will make it through. It is an awful experience and not one I would wish upon any family. Thankfully Bailey’s tremendous courage, inner strength and fighting spirit together with the “angels” (doctors and nurses) of Intensive Care pulled him through once again. Unfortunately this has not been our first visit to Intensive Care and won’t be our last. After 4 weeks in Intensive Care we are now home once again. Albeit, with more medical equipment. He has come home on a Bi-PAP Ventilator to assist him to breath and keep his airways open at night. Without this machine his airways will collapse again.

Bailey’s life is complicated and so that he will continue to live he requires medical intervention and lots of tender loving care. He only able to eat small amounts orally and therefore relies on being feed through a “tummy peg” which is inserted direct into his stomach. He is feed for 12 hours overnight with a complete formula specially designed for this type of feeding. Bailey also requires daily chest physiotherapy to help move secretions from his lungs and airways, he requires to wear splints on his legs to help with contractures (tightening of joints), he is unable to sit unaided and requires special seating equipment and positioning him correctly can take time. He has a standing frame and he stands for at least one hour a day in this fully supported frame. He loves to swim. At night he requires to be turned 2 to 3 hourly as he gets pressure marks from laying for too long. This is just a small snippet of his everyday life and in amongst his daily requirements we make sure he does “normal” activities to. He loves going to the park and beach, playing playstation with his brother, visiting friends, learning the ABC and reading etc. All those normal 3 year old activities.

Bailey takes this all in his stride and often wonders what all the fuss is about. Bailey is fortunate in that he has a very loving family and we have a good support network. Although an extra pair of hands is always welcome and my husband and I have forgotten what a good night’s sleep is like!

As you may well imagine Bailey is an expensive child to maintain, medical equipment is expensive. We have a little help from the Government for which we are thankful but this funding covers very little of the medical expenses. Each year we hold a fundraising function to help cover our costs. With the generosity of our wonderful friends and local business people we manage to obtain the equipment that Bailey requires. However expenses will always be ongoing and every small amount helps enormously.

The very things in life that we all take for granted, such as breathing and walking, are the very things that challenge Bailey every day. Bailey lives against all odds. He has taught us not to take things for granted but to live each day as it comes and to appreciate life for what it is. We can all learn a lesson from Bailey and indeed all children with special needs.