The Michael Papaioannou Fund - a Child Diagnosed with Lesch-Nyhan Disease

March 11, 2005

The fundraiser held on February 19th at the Country Heritage Museum was a huge success. More than 400 tickets were sold for the event and close to $60,000 was raised for the Papaioannou family for medical and travel expenses necessary for Michael's treatment.

The Papaioannou family will be traveling to San Diego next week to visit Dr. Nyhan, one of the founding doctor's of Lesch-Nyhan Disease. They are hoping to get Michael the necessary medical care that this rare disease requires.

Please check back to this page in the near future for an update on the family's visit to see this doctor.

Bands that Rock the Cradle
Tickets available for Michael Papaiannou fundraiser
By Donna Danielli, Halton Compass, Jan. 28, 2005

Sales have been brisk but tickets are still available for the upcoming Benefit Concert and Fundraiser for Michael Papaioannou. At a year of age, Michael has been diagnosed with Lesch-Nyhan Disease (LND), a disease so rare that it occurs once in every twenty million people worldwide. Michael is the youngest patient ever diagnosed with LND and it is not known at this point of time how severe his symptoms will become.

A research facility related to Lesch-Nyhan has been established in San Diego and it is the hope of Peter and Melissa Papaioannou, Michael’s parents, to take Michael as often as possible to the facility to participate in research that may lead to a cure for LND.

Local businesses and volunteers have opened their hearts to the youngster’s plight, with a Benefit Concert and Fundraiser planned for Saturday, February 19. The event will take place in the Gambrel Barn at Country Heritage Park on Tremaine Road in Milton, one of the region’s most popular locations for weddings. Country Heritage Park General Manager Reg Cressman was quick to volunteer the Gambrel Barn for the night and will also be volunteering his time, along with several of his staff members, for the evening. “How could we not help?” said Reg when asked for his support. “Especially when it’s for a sick child.”

Local caterer Allison Vaux, owner of Allison’s of Milton, has taken on the heady task of managing the food for the buffet that evening. “I’m a mother too, and my heart just went out to Peter and Melissa,” explains Allison, adding that just researching the disease on the internet (www.lndinfo.com) left her and her office manager Debbie in tears. “It puts everything in perspective and makes you thank God for what you have. You wouldn’t ever want to see your own child go through this.”

Entertainment for the evening has been donated by local musicians, offering a wide variety of music. Kelly MacIntyre, with her talented easy listening style will be joined throughout the evening by a Frank Sinatra Tribute Band, country singer Alysha, and rock bands LTD and the Caroline Wiles Band. Sound management has been donated for the evening by Greg Parsons. Jeff Lumby, former Y95 host and currently starring on the Red Green Show will act as master of ceremonies for the evening. “Something for everyone with terrific music and an MC who is one of the funniest people that I know,” says event organizer Donna Danielli, who is absolutely amazed at the generosity of everyone involved. “We have had a large number of calls, from people and businesses donating prizes for the silent and live auctions, or the food necessary to create the buffet, or by making a cash donation. It has truly been heart warming to see the response from the community.”

Donations have come in many sizes with including huge support for the event from Country Heritage Park and the Halton Compass. Campbellville’s Stonegate Properties was one of the first to sign on as a gold sponsor of the event with a cheque for $1,500, but equally touching to Donna was the elderly woman from Rockwood who pressed a $20 bill into her hand. “She doesn’t have a great deal, she’s a senior on a pension and yet it was very important to her to help this little boy,” says the grateful event coordinator.

For information on the event or to purchase tickets at $40 per person, please contact Donna Danielli at 905-854-2469. “I have two main goals for the evening,” explains Donna. “Obviously we’d like to raise money to help Michael and his parents, that’s our main goal. But I would also like to put on a fun evening, for everyone to walk away after the event saying, that was great, I really had fun. If we can do those two things, that would be wonderful.”

The High Cost of Loving
Fundraising concert set for February 19, 2005
By Donna Danielli, Halton Compass, Dec. 17, 2004

In the New Year, like countless parents before them, Peter and Melissa Papaioannou will take part in a time-honoured ritual as they formally baptize their eleven-month-old son, Michael. The joyous occasion will be bittersweet for the young couple, as Michael has recently been diagnosed with Lesch-Nyhan Disease (LND).

LND is caused by a genetic mutation of the X chromosome and its symptoms are varied, but may include the compulsion to self injure. The symptoms and severity can vary from patient to patient. Michael is only the third diagnosed case in Canada, and he is also the youngest patient to ever be diagnosed with LND. The disease is often first suspected because of an orange crystal substance found in the diaper, as well as poor motor control and difficulties sitting, standing and walking. The life expectancy of a LND patient can be shortened and the high uric acid they produce can cause kidney failure if left untreated.

“It’s a devastating diagnosis,” says Peter, owner and operator of the popular Trail Eatery in Campbellville. “It’s a hard thing to swallow when your child is diagnosed with a disease that is incurable, especially a disease like this.” Peter and Melissa are determined not to let the diagnosis of LND define their child though. “Michael is a very happy, very bright child, who also happens to have an incurable disease,” explains Peter. “He smiles every morning as he wakes up. He gives us hope as parents, that we’re going to get through this.”

Growing increasingly concerned with Michael’s difficulty in sitting up and that mysterious orange crystal substance in Michael’s diaper, and facing a long wait before they could be seen by a doctor at the Hospital for Sick Children, Peter, Melissa and Michael headed to Boston. “My cousin is a neurosurgeon there, and arranged for us to be seen at one of the best children’s hospitals in the world,” explains Peter. A week’s worth of extensive testing brought a diagnosis that staggered the young parents. Michael had LND.

“My odds of winning a lottery are higher than the odds of my child having this disease,” says an emotional Peter. “I may never see my son run and play with other children. I would give anything if it could be me that was sick instead of him.”

Heartbroken, the Papaioannous returned to Canada, knowing there was little to be done for Michael in terms of treatment. So much is still unknown about this extremely rare disease, with only three cases in Canada and twenty in the U.S., and there is no way yet to tell how severe or mild Michael’s symptoms may be. Dr. Nyhan, who originally identified the disease in the 1964, still runs a research facility in San Diego and has communicated an interest to see and work with Michael. However, the payments for the bills incurred in Boston still hang over Peter and Melissa’s head along with concerns about setting aside money for future medical needs and covering travel expenses as they take Michael as often as necessary to see Dr. Nyhan in San Diego

The Halton Compass is proud to announce its support of a fundraising event for the Papaiannou family, a benefit concert to be held on Saturday February 19. Many thanks go to Country Heritage Park for their generous donation of the Gambrel Barn for the event, Allison’s of Milton for their help coordinating the event and local musicians Kelly Macintyre and friends, the Caroline Wiles Band, country singer Alysha, rock band LTD and sound manager Greg Parsons for volunteering their services for the night. Tickets for the event are $40 per person and will include live entertainment, a cold buffet, silent auctions, cash bar and more. Tickets are available at the Trail Eatery in Campbellville and the Vacuum Store in Milton. Any person or business wishing to volunteer, donate a silent auction item, purchase a ticket or help out in any way, are encouraged to contact Donna Danielli at 905-854-2469. Cash donations can be made at any Scotiabank to Account # 10652 0036188, the Michael Carl Papaioannou Fund. For more information on Lesch-Nyhan Disease, see the website at www.lndinfo.org.