No-one likes spending much time in hospital, as 12-year-old Xavier Cock will attest.
Xavier, who has Vascular Ehlers-Danlos Syndrome (vEDS), spent eight weeks in the Women’s and Children’s Hospital (W&CH) last year (from September to November), after being admitted with a perforated bowel.
“We took Xavier to hospital suffering from stomach pain, and they thought he had appendicitis, so flew him to the W&CH, but after a CT, they found he had a perforated bowel and sepsis,” Xavier’s mum, Krystal Cock (nee Taylor formerly from Balaklava) said.
Some eight weeks later, Xavier returned home to the farm near Bute, but six weeks later, just two days before Christmas, he experienced abdominal pain again.
“We jumped in the car and headed straight to town, and were met by paramedics near Two Wells who took him in an ambulance to the W&CH, where he was diagnosed again with a perforated bowel, sepsis and serious infections,” Krystal said.
Krystal, husband Hadyn and their two younger boys, Albert and Oscar, then spent Christmas Day in a unit run by Ronald McDonald House Charities, which is still their home-away-from-home.
“It was a very stressful time – it was an hour-by-hour situation as Xavier’s body was shutting down – but we were looked after so well by Ronald McDonald House,” both Krystal and Hadyn said.
“Food was supplied on Christmas Day along with presents for the kids – we were so grateful to Ronald McDonald House for helping us and making things a bit ‘normal’.”
“We are over the moon with the support we have received from Ronald McDonald House and all of our family and friends – it’s overwhelming,” Hadyn said.
Xavier was diagnosed with vEDS when he was eight, after having continual bruising all over his body.
Vascular Ehlers-Danlos syndrome is caused by a mutation in collagen type III, a connective tissue protein present in the vascular tissues.
People with vEDS have thin, fragile skin and hypermobile joints, with arteries and organs that are also fragile and prone to rupture.
Four minor diagnostic features – distal joint hypermobility, easy bruising, thin skin, and clubfeet – are most often present with children suffering from this rare condition, but other conditions include translucent skin, thin lips, narrow nose and prominent eyes, fine hair, and sleeping with their eyes open.
“Xavier was born with hip displasia, and at two weeks old had pneumothorax – but he was born six weeks early, so we didn’t think much about that, and nothing else was noticed at that stage in regard to this syndrome,” Krystal said.
While this disease is usually hereditary, there is no history of this in Xavier’s family, so it was caused by a ‘spontaneous mutation.’
“Doctors haven’t seen Xavier’s condition in kids before – basically he is a test dummy with treatment being by trial and error,” Krystal said.
“But they are so careful with their approach, and the experts all contribute with advice and opinion, and we really appreciate everything they are doing.”
Xavier, his brothers and father have all played cricket and footy for both Bute and Hummocks-Watchman, so the two clubs have decided to join forces and hold an ‘X Man Big Bash Cricket Day’ fundraiser on Sunday, March 14 at Bute Sports Club to raise funds for Ronald McDonald House Charities.
There will be a junior game at 10am (U13) and a senior game at 1.30pm.
A silent auction and raffle will be run prior to the event.
If you’d like to register to play cricket, please contact Anthony Williams (Hummocks) on 0407 795 920, or Anthony Wehr (Bute) on 0413 993 596.
There will also be food, drink (no BYO), music and entertainment on the day.
If you can help in any way or would like to make a donation to the cause, please contact Emily on 0428 396 679.
Xavier is still in hospital, but was moved to a ward on Monday which is a positive step, with Krystal saying he was in good spirits.
“His infection levels are low now, so he is well in himself, but exhausted,” she said.
“We take it one day at a time, but we have faith and trust in the doctors to keep things going in the right direction,” Krystal and Hadyn said.