HAYBOROUGH - Having six children means you are going to be pretty busy all the time.
But for Hayborough parents Bobby and Marcus Fulton, busy is an understatement as for the last nine years they have been in and out of hospitals constantly with their daughter Tabetha.
Tabetha's story is one of a brave girl and her extraordinary will to be "normal".
Tabetha was born 12 weeks premature via emergency caesarian in 2002.
Her lungs were underdeveloped, and as a result she suffered spontaneous bilateral pneumathorax, which means when doctors had to attempt to manually inflate Tabetha's lungs, they tore, leaving the little baby with holes in her lungs.
The next few days were a battle and Marcus and Bobby were told to be prepared for the worst.
"It was at that point that the actual magnitude of Tabetha's condition started to become clear to us; it marked the beginning of many battles that we would have to fight and win to ensure that our tiny Tabetha has the best possible chance at life," Marcus said.
The complications for little Tabetha continued, and at nine months she was diagnosed with asthma and she had her first unconscious episode at three while suffering from what had been diagnosed as croup.
Despite the endless tests from countless doctors that Tabetha endured during the next six years, along with a lack of understanding of rare diseases, Tabetha's condition remained a mystery.
She was continually misdiagnosed as being a "chronic and unpredictable" asthmatic and it was a frustrating and difficult time for the family.
Now, at age nine, Tabetha is being treated for an undetermined form of Children's Intersitial Lung Disease (chILD), which is classified as a group of rare lung diseases found in infants, children and teens.
She is required to be on oxygen for at least 12 hours but as much as 24 hours a day and take medication every four hours.
Thankfully now Tabetha enjoys a better quality of life at home with her family and has been hospital free for almost six months.
She is gaining weight and getting taller and has also managed 18 days at school this year which is a record for the bubbly nine year old.
Common viruses continue to be a concern and early recognition and affirmative action are imperative to reduce the risk for Tabetha as simply the common cold can result in a four week hospital stint.
"Evidently misdiagnosis leading to mistreatment has impacted greatly on her health and our ability to fully understand Tabetha," Marcus said.
"Though we have strong indicators her only chance for a definitive diagnosis now is via a lung biopsy, however she falls into multiple high risk categories for this procedure and this remains a decision yet to be made."
It is predicted that by age 16 Tabetha will require a full lung transplant, but until the risky biopsy procedure is performed and this is confirmed, Tabetha can not be placed on the organ donation waiting list.
For Bobby and Marcus the difficulties they have been through is something they want no other parent to have to face.
Bobby has been in contact with other parents of chILD sufferers and has initiated an Australian branch of the chILD Foundation with the support and guidance of established UK and US models.
The foundation will raise money to provide information and support for the rare disease, which is estimated to have 50 sufferers currently in Australia.
"Our goal is awareness, that is what we need out of this," Bobby said.
"The hardest thing with chILD is that everyone is so in tune with asthma and there is so much support for asthma sufferers but there is nothing in Australia for chILD," she said.
"If I could have been given a pamphlet all those years ago that listed the risk or highlighted the possibility of her developing chILD as a result of her procedure at birth, I mean there are no guarantees you are going to develop chILD, but then we may now be weaning her off oxygen rather than considering a transplant.
"There as many people in Australia suffering from diabetes as there is suffering from a rare disease, there is just not the same recognition or funding.
"We can't change what happens to Tabetha now but we can change things for other children. We have gained a lot of knowledge through our journey, but the most satisfying knowledge is that Tabetha is normal, she just needs the right company."
With the plans for the foundation in its infancy stages, Bobby and Marcus are passionate about moving forward and helping other parents.
Bakers Delight in Victor Harbor are the first to join the cause and will be selling 'Tabetha buns' as a fund raising initiative from January 12 to 31.
Plans are also underway to mark International Rare Disease Day on February 29, 2012.
If you would like to get involved with the foundation or to find out more you can email Bobby and Marcus at marcosmadhouse@hotmail.com
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