From TorontoSun.com, Toronto, Canada, By MARYAM SHAH ,TORONTO SUN
Dressed in Converse Superman sneakers, Jarrett Osborne admits he has a bit of a saviour complex.
The urge to save is fitting since his youngest son Harrison was born with polycystic kidney disease 19 months ago.
“Both his kidneys are enlarged,” Osborne, 38, said. “They’re riddled with cysts.”
Curly brown hair frames Harrison’s big dark eyes. He calmly sits in his father’s lap inside their Milton home, reaching out to touch a piece of paper or a cellphone. He looks and acts like most children his age – bright-eyed, curious, playful.
You can hardly tell he’s lost 50% of the function in one kidney. Or that he has grown so weary of people in white lab coats, he screams every time he enters a doctor’s office.
Osborne talks matter-of-factly about the cysts on Harrison’s kidneys, which are “compressed like an accordion.”
“It’s a hidden disease,” he said.
Recessive polycystic kidney disease is a rare form that affects 10-40 children in Canada each year.
It has no cure.
All the family can do is monitor his diet, especially his liquids, and keep an eye on his blood pressure. There’s a chance his kidneys may fail later in life.
Enter six-year-old Clark Kent Osborne, Harrison’s older brother, who’s been kept in the dark about his brother’s illness.
Like his comic book namesake, Clark Kent may one day be the superhero Harrison needs, if he’s required to donate a healthy kidney to save his brother’s life.
“I was under the illusion for a little while that they’ll just get better,” Osborne said. “Or that, if they ever did fail, you just get a transplant and that would get the disease better. But right now there’s no cure for the disease. The disease stays.”
He and his wife Angie Camalleri, 37, are teachers. Harrison is their second son, born on March 8, 2012. They discovered his disease through prenatal ultrasounds.
Harrison wasn’t even born when his kidneys started to develop cysts and deteriorate. His parents were told they each carried the recessive gene for their son’s ailment.
“There’s no way, are you kidding me?” Camalleri said, recalling her first reaction to the news.
They were also told they were lucky because five years ago, ultrasounds would not have caught it, she said.
A stressful pregnancy eventually culminated in an emergency C-section on – Osborne notes ironically – World Kidney Day.
Osborne and Camalleri show no signs of bending under the pressure of constantly checking Harrison’s diapers to ensure he’s urinating properly, or sometimes syringing water down his throat to keep his fluid intake normal.
Angie doesn’t blink when Harrison trips on the carpet in her upstairs living room.
“He’s tough, believe me,” she said as he picked himself up.
One in 10 Canadians suffer from some form of kidney disease, according to the Kidney Foundation of Canada. Every day 15 people on average are told their kidneys are failing, national executive director Paul Shay said.
Since symptoms don’t manifest until later, “most of the people who have kidney disease don’t even know they have it,” he said.
One of the foundation’s ongoing concerns is raising both awareness and cash, he added.
“For a number of reasons, cancer and heart disease tend to be higher up in the public awareness,” Shay said, possibly because they are “more dramatic” than kidney disease, which is often called a silent killer.
The foundation hopes to raise $50 million over the next five years and Osborne wants to “crush” that goal.
As an illustrator, he always knew what he wanted to do with his comic art: help a worthy cause.
After Harrison’s birth, “it came together” for him, he said.
“The cause was easy for me,” Osborne said.
He’s now trying to crowdfund $30,000 in 30 days onhttp://startsomegood.com/popremedy, a company he created that runs on the basic premise of creating comic strips for a cause.
“If everybody’s reading something they enjoy, and you can connect that to a charity, we know what happens,” Osborne said. “It becomes just a monster in education and awareness.”
There are 11 days left to reach his goal. The funds will cover the cost of producing and marketing a comic strip collection for print and online, he explained.
“Create product, create merchandise, sell it and have proceeds of that go back to the foundation,” he said.
He hopes other artists will join him to fundraise for their respective causes.
He also remains optimistic about Harrison.
“I want him to be healthy and not in pain and to not be afraid of his disease,” Osborne said. “I want him to embrace the fact that education is power and that you can inspire people to do great things.
“Just because he’s got kidney disease doesn’t mean he’s going to live any less than anybody else.”
From LimaOhio.com, Kalida, Ohio, by Lance Mihm
Life has forced 17-year-old Luke Kaufman to face many challenges early in life. Thankfully, he has an entire community willing to face the challenges right along with him.
Luke was born with polycystic kidney disease, which causes him to have an enlarged kidney, full of cysts. This led to decreased functioning. The disease now has caused him to have problems with his liver.
On Saturday, the community will rally behind Luke and his family by hosting an all-day benefit at the Kalida Knights of Columbus Hall.
Health insurance has not been an issue, as the family had the appropriate medical coverage. Frequent doctor’s appointments and hospital stays have caused his parents, Darren and Kathy Kaufman, to miss countless hours of work.
“We have had a lot of unpaid time off,” Kathy Kaufman said. “We also have a lot of prescription costs. He is on 15 medications that he takes two to three times a day. The prescription costs do not go towards our deductibles.”
Luke had his first kidney transplant in January 2001. His father was the donor. Problems caused the removal of his spleen about a year later.
Luke at first did well, but problems again began. In July of 2012, he had a second kidney transplant. His mother proved to not be a match, so the family participated in a program where they were paired with three other families. Luke’s mother donated a kidney to another patient involved with the group, while Luke received one from another parent.
He had two bouts of septic shock and two hospital stays in January and February of this year. Doctors originally were unable to determine the cause. After another lengthy stay in the hospital from July to September, doctors determined Luke had congenital hepatic fibrosis and needed a liver transplant.
Kathy Kaufman said Luke is now registered at both Cincinnati Children’s Hospital and Children’s Hospital of Pittsburgh for a transplant.
“He has spent 85 days total in the hospital this year,” Kathy Kaufman said. “He is now registered for a transplant at both hospitals. The liver will come from a deceased donor. We don’t really know when it will be. It could be tomorrow. It could be a year.”
Despite his illnesses, Luke remains optimistic. He is finishing high school through online courses and staying as healthy as possible until a matching liver is available.
“He has good and bad days,” Kathy Kaufman said. “The past 10 days have been a little rough. He has had some high fevers and some pain, but he has stayed out of the hospital. He is a very strong and resilient young man.”
The event will kick off with registration for a 10-kilometer run at 9 a.m., with the race beginning at 10 a.m. The hall will open at 11 a.m., and the OSU-Illinois game will be televised at noon. A photo booth will be available from 11 a.m. to 2 p.m., and children’s games will run from noon to 4 p.m.
A pork loin dinner will be available from 4 to 7 p.m. A raffle and silent auction on several items will be available all day, and a live auction will run from 7:30 to 8:30 p.m. A 50-50 drawing will be drawn at 7 p.m. A deejay will play music throughout the day, and a band will play immediately after the live auction.
“We are very humbled by the community, our family and our church and their willingness to do this,” Kathy Kaufman said.
PKD Treatments
From PRUrgent.com
Therapies for Polycystic Kidney Disease (PKD) have eluded the medical community and PKD patients for years. However, recent scientific studies have begun to yield promising results.
Can drinking more water slow the growth of renal cysts? Is Tolvaptan safe? These are among the questions PKD patients are asking themselves and it’s a good point in time to re-examine the current treatments and find out about the potential for more from innovative Canadian kidney researcher, Dr. Moumita Barua.
Dr. Barua completed her training in internal medicine and nephrology at the University of Toronto in 2009. From October 2009 to July 2013, she did a postdoctoral research fellowship at Harvard Medical School under the supervision of Dr. Martin Pollak (an expert in genetic studies of familial glomerular diseases). She now works with nephrologist Dr. York Pei at the Toronto General Hospital.
"Dr. Barua is expanding her clinical expertise in hereditary kidney disease (HKD) with the goal of applying her research methodologies more broadly. To support this endeavor, The PKD Foundation of Canada and Tuberous Sclerosis Canada Sclérose awarded Dr. Barua with the 2013-2014 Translational Research Fellowship in HKD," noted Shiona Mackenzie-Morrison, Hamilton Chapter Coordinator of the PKD Foundation of Canada.
Because diverse genes cause renal cysts and as there often is multi-organ involvement with PKD, more than one therapeutic approach may be required to treat it.
"Anyone interested is welcome to join us at St. Joe's on November 17 for Dr. Barua's overview of autosomal dominant Polycystic Kidney Disease, with a specific focus on current and future therapies," Mackenzie-Morrison added.
The public presentation is part of an ongoing series of free 2-hour informational support meetings hosted by the Hamilton Chapter of the PKD Foundation of Canada six times a year. Registration is not required. On-site parking (payment required) and street parking (free) is available.
PKD is a genetic disorder in which clusters of cysts, noncancerous sacs containing water-like fluid, primarily develop within the kidneys. The disease also can cause cysts to develop in the liver and other organs. High blood pressure and kidney failure are common problems for people with PKD.
More information is available on the PKD Foundation of Canada website.
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