When Zain Clark, born March 25 2009, was diagnosed at 3 months with bronchiolitis, Mum Shelley Clarke knew it had to be something more – something worse. One morning, Zain’s breathing became so fast, his lips were blue. “I remember running down the hospital corridor with him limp in my arms, screaming.” But again, Zain was discharged, with a diagnosis of bronchiolitis. Zain’s condition persisted over the next few months, requiring frequent hospital admissions for respiratory distress and chronic lung ailments requiring oxygen and a suite of medication. One doctor later confided to Shelley that he thought Zain had cancer. Finally, in September 2009 Zain was diagnosed with a rare lung condition known as bronchomalacia.
In December 2009, Zain became acutely unwell. He started going blue and then coughed up a substance from his lungs – lots of small pieces of hard cartilage, one piece about 2cm long and half a centimetre wide. Subsequently Zain was also diagnosed with the extremely rare condition ‘Plastic Bronchitis’ where hard, plastic-like secretions form in the lungs. He is only the fifth Australian child to be diagnosed with the condition and one of about 50 patients around the world.
“Zain’s life expectancy is limited. We were first told two years old, then three, then five, and now they don’t know as he is proving the odds wrong,” his proud mum says. Doctors prescribed medication and a daily routine of 30-60 minutes of intensive percussive physiotherapy to clear his airways and lungs of the plastic secretions, which have been up to 5cm long and cause intense pain when dislodged.
In August, Shelley and dad Nathan discovered the existence of a mechanical airway clearance system known as ‘The Vest’, which effectively does the physiotherapy by squeezing Zain’s chest. Better yet, it cuts the physiotherapy down by at least half. There was only one drawback – it cost $10,500. Shelley began working extra shifts to raise money to buy the vest, while Nathan spent more time with Zain and his older sisters. But local pharmacist Michael Flannery knew of the Humpty Dumpty Foundation and wrote to Humpty and asked for help in buying The Vest for Zain.
“How could we say no?” says Humpty’s General Manager, Angela Garniss. Humpty purchased The Vest, which Zain has dubbed his “tickle vest”, from its Special Projects Fund, which has been used for special cases.
“When Zain first used The Vest it scared him a little,” his mum says. “We sat with him and laughed about how his voice sounded when he was trying to talk. He started laughing and said it tickled him – and so it was named ‘the tickle machine!’” The Vest has given Zain more time to be a normal toddler.
“Nothing is more important to us than our family and we are so humbled to think the Humpty Dumpty Foundation – that has never had the pleasure of meeting our son – would make such a touching gesture,” Shelley says. “It has improved his quality of life so much. Thirty minutes more play-time in a day to a four-year-old is priceless. It doesn’t sound like much, but to Zain it is the world. Zain may not be here for a long time, but he will have a good time while he is here.”