Samson’s epic battle for survival
BEAUTIFULLY decorated tables dressed with white linen and laden with tiered trays of delicious sweets and savouries welcome the ladies as they find their way to their allocated seats.
The room is filled with chatter as old friends meet up and new friends are introduced.
The coffee and tea brews in the corner of the room, filling the air with an appetising aroma. After tummies have been filled, the room quietens to a more sombre mood as the first speaker introduces the reason for the high tea fundraiser.
"Good morning. My name is Kathleen and I would like to welcome you to this fundraiser for cystic fibrosis research."
Cystic fibrosis is a fatal genetic disease that is fought on a daily basis.
Those affected are born with it and with figures of one-in-2500, that's one baby born with cystic fibrosis every four days.
Even with these staggering figures, only 9% of necessary costs are covered by the government. This is largely due to a lack of awareness.
It is this awareness that Katrina List is eager to take to a broader community.
On January 24, 2007, Katrina and Deon were elated at the birth of a beautiful baby boy. Weighing in at a healthy 2900g, their little boy looked perfect in every way.
The family celebrated the arrival of their second baby and you couldn't wipe the smiles off of their faces.
They gave him the name Samson, which has the biblical meaning "of the sun" or "of exceptional strength".
Three weeks later, the results for the neonatal heel prick came back.
Not expecting anything to be a matter of concern, Katrina and Deon were devastated to hear that their perfect baby boy was born with a disease that would cause him and his family to fight for his health every day for the rest of his life.
"I spent the next two months crying," Katrina said, "and the tears still flow. I can't count how many times I've cried myself to sleep."
Cystic fibrosis primarily affects the lungs and digestive system due to a malfunction in the exocrine system, which is responsible for producing saliva, sweat, tears and mucous.
CF sufferers produce an overabundance of thick, sticky mucus that causes impairments of the digestive functions of the pancreas and traps bacteria in the lung.
These bacteria result in ongoing infections, which lead to irreversible damage.
With only 50% of CF sufferers reaching their late thirties, the daily race is to keep the mucus moving and off the lungs, airways and digestive system. It is imperative that people with CF do not come into contact with colds and flu.
A quick overview of an ordinary day in the life of Samson starts at 5.30am with a nebuliser mask infusing saline into his system for 10 minutes.
This is followed by 40 minutes of physiotherapy percussion to move any build-up of mucus on the lungs that may have been sitting overnight.
Samson's breakfast is accompanied by five tablets that assist in absorbing fats into his system, as his body does not produce the enzyme for this to happen automatically.
After breakfast, Samson has another 10 minutes with the nebuliser mask on before he goes to school.
Due to the inability to absorb fats, Samson's lunchbox looks distinctly different from those of his siblings.
Packed with chocolate, chips and packet foods of many types, this lunch would make any child's eyes light up, but for Samson, it is a fight for survival.
For each morning tea and afternoon tea, Samson takes two to three enzyme tablets, and four to six with lunch and dinner.
The nebuliser goes back on for 10 minutes before bed and then it all starts again at 5.30 the next morning.
This picture may cause you to imagine a sickly, thin-looking child but Samson is quite the contrary.
True to his name, he is a strong little man, thanks to the strength, perseverance, defiance and ongoing nurturing of his parents to keep this little boy in the best shape possible.
The first thing that strikes you when you meet Samson is his beaming smile. It is as though a light shoots through his eyes straight into your heart.
He is active, loves sports and at age five, has recently mastered wakeboarding with his watersports- loving family.
He may only be little but his impact is bigger than his body. In his first year of Prep, Samson excelled in PE.
A senior student who helped in Samson's class each week was so impacted by this little guy that, at the end of his time there, he was moved to write this letter:
This is my last day of school and you were on my mind. I wanted to take this opportunity to encourage you to keep being the amazing person you are. I have watched you this year and have been inspired by you. You have shown me you are an amazing strong man and I want you to keep strong and don't let anything hold you back. You just being yourself has encouraged me in my walk of life. You have impacted my life and I will always remember you and I hope to see you in the future.
As the morning tea comes to a conclusion, it is heartbreakingly clear that these precious little children will have their lives cut short by a sentence that appears unfair and cruel.
There is not a dry eye in the house. Samson's story touched each and every heart.
His story is similar to others with CF and this disease needs champions.
Take the time to visit the cystic fibrosis website for more information and ways in which you can help.
CYSTIC FIBROSIS FAST FACTS
Cystic Fibrosis (CF) primarily affects the lungs and digestive system. No cure is available.
People with CF develop an abnormal amount of mucus in the lungs, airways and the digestive system. This causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs.
From birth, a person with CF undergoes constant medical treatments and physiotherapy.
Despite major advancements in the treatment of CF, only 50% currently reach their late 30s.
HOW CAN YOU HELP?
CF Qld will launch its Boredom Buster Bag appeal next week.
The bags are given to kids with CF while they are in hospital, often in isolation for up to two weeks.
They cost $25 each and contain books, games, chocolates and lollies. Go to cfqld.org.au to donate.
Friday, May 31, is 65 Roses Day, the culmination of a month-long campaign.
Why 65 roses? The phrase was created when a younger brother of a small child, who had been diagnosed with CF in the late 1950s, was unable to pronounce the name of the disease.
Instead he said that his sister had "sixty-five roses". Since that time, the rose has become the symbol of CF around the world.
The current Mater Prize Home in Kingscliff is raising money for kids with CF.
Buy tickets online at: materprizehome.com.au
Governor Penelope Wensley is Cystic Fibrosis Queensland's patron.