Boys find ray of hope in US
HOW would you cope if your kids couldn’t eat most fruit and vegetables, dairy products, wheats, grains, soy and any food containing sugar?
Tweed parents Ernie and Karla Williams’ three young boys, Jaawan, 11, Elih, 9, and Khaden, 4, were all born with a rare metabolic condition called renal sulphate wasting which affects their major organs, requiring constant IV fluid and dietary management.
Deviation from the diet causes the boys acute pain and discomfort.
They have to spend a lot of time in hospital receiving intravenous fluids as toxins build up in their bodies.
After 11 years struggling with their children’s health, the Williams have been offered a ray of hope.
They had run out of medical options in Australia but a specialist in the United States is now achieving some success with a new treatment that is dietary and supplement-based rather than drug based.
“This is huge for us,” said Karla.
“The boys really suffer a lot of pain and we’re determined to find answers.
“We had run out of answers here, and everyone had put us in the too-hard basket.”
“Now this specialist has offered to help us. He has tests and treatments that aren’t available here.”
Just after deciding to find a way to get to the United States, Karla’s mother won a family trip to Disneyland which she gave to the family.
To top it off, the specialist was only 20 minutes drive from there.
The specialist has a three year waiting list but agreed to fit the boys in if they could get to California.
But the remaining problem is the cost of the IV fluid for the journey and the treatment itself.
“We still need to raise about $4200,” Karen said.
Gina Combo, the chief administration officer for the Tweed Byron Local Aboriginal Land Council, was deeply moved by the Williams plight and has stepped into the breech to help raise funds for the family.
“In the past decade Ernie and Karla have tirelessly researched the boys’ condition,” she said
“They are seeking any kind of financial assistance that might help towards paying the consultation fee of the specialist, plus the IV fluids for the children’s medical condition while in America.
“It is their goal to work towards finding a cure and/or the necessary treatment to improve their children’s quality of life. It has been a long and exhausting journey for them and together they are determined to find a cure for their boys and stay strong and positive for them.”
Anyone who wants to assist can contact Ms Combo on (07) 5536 1763.