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Do IT this week: Layering
Local boy, 10, living with CFC Syndrome
By Jewell Cardwell
Beacon Journal columnist
Published on Monday, Jan 26, 2009
Jack Doyle is poised to make his First Communion this year at Akron's St. Vincent Catholic Church.
That's just one of the blessed milestones Tim and Judy Doyle of Medina, who are so much a part of his journey, will celebrate this year.
Jack, who is 10 but looks like he's 5, was diagnosed with cardio-facio-cutaneous syndrome, an extremely rare genetic disorder affecting only about 200 people worldwide.
''We have been very blessed to have received great medical care for Jack at Akron Children's Hospital,'' Judy Doyle writes.
Considered medically fragile with a plethora of health problems early on, Jack has greatly improved. ''He does have some ongoing issues with his spine and heart that are monitored,'' his mother continued.
''Our biggest health problem right now are his headaches. We currently work with the hospital's pain center to try and overcome them. . . . I actually got my job at Children's as the Parent Mentor Program coordinator through my medical experiences with Jack.''
The Doyles also feel fortunate to have found CFC International, which was started by another parent of a CFC child.
To help raise the much-needed research dollars for this disorder and awareness, the Doyles will host their sixth annual CFC Chili Bowl at 7 p.m. Feb. 21 at the Medina Eagles Club, 696 Lafayette Road (U.S. 42), Medina.
It's $30 to enter your pot of chili (includes one admittance). The winner is chosen by popular vote; first prize is $100. It costs $15 to taste.
The Chili Bowl, say the Doyles, just seemed like a natural fit, given little Jack's own love of cooking. Jack is a second-grader at Medina's Heritage Elementary School.
For information, please call 330-543-3072 or e-mail jdoyle@chmca.org
Teen battles arthritis
Hats off to Kayla O'Connell for embracing hope over fear.
Thirteen-year-old Kayla, who attends St. Sebastian School in west Akron, was diagnosed with arthritis on her 12th birthday, Sept. 21, 2007.
Her parents, Christopher O'Connell and Lori Clark, thought at the time their very active daughter (volleyball, dance, cheerleading, soccer, etc.) had pulled a muscle, which was accounting for the pain in her hip and thigh.
Kayla, who is under the care of Dr. Hulya Bukulmez at Akron Children's Hospital, one of only a handful of pediatric rheumatologists in Northeast Ohio, has polyarticular juvenile rheumatoid arthritis in her hip, neck, hands and knee.
According to the Arthritis Foundation, one in five Americans or 46 million people have doctor-diagnosed arthritis. That includes 300,000 children.
While Kayla is far from out of the woods, especially when the temperature dips way down low, she has been able to return to volleyball. Beyond that, she's become active in getting the word out about her disease.
She and her father raised awareness and more than $2,500 at the Arthritis Foundation's 2008 Cleveland Arthritis Walk. Father and daughter are forming another team for the 2009 walk — May 2 at the Cleveland Metroparks Zoo.
On Thursday, O'Connell and his wife will be volunteering at the Arthritis Foundation's Red & White on Thursday Night fundraiser at the John S. Knight Center, 77 E. Mill St., downtown Akron. Proceeds go to support programs, services and research.
Tickets are $75 in advance or $90 at the door. VIP tickets, which include a high-end wine tasting from 5:30 to 6:30 p.m., are $125. For information about tickets or auction donations, please call 330-644-3390, ext. 11, or e-mail angelasmith@arthritis.org.
Photos for parents
Carol Clevenger, bereavement coordinator in labor and delivery at Summa Health System, works very closely with all of the families who have suffered the heartbreak of losing a baby.
She writes very poignantly about a special group of volunteers with their hearts in the right place:
''There is a group of professional photographers in the Akron (and I think surrounding) area who have joined NILMDTS — Now I Lay Me Down to Sleep. These are photographers across the U.S. who come to hospitals and take beautiful pictures of families and their babies. They put these pictures in a photo album and on a video with music and give them to the families at no charge.
''These photographers come to us on their own time. During the past month, they have come on holidays and the day before or after, just because they believe in what they are doing. It is a beautiful program and gives our grieving families some mementos that they will treasure forever. . . . It's a wonderful program.''
Jewell Cardwell can be reached at 330-996-3567 or jcardwell@thebeaconjournal.com.
Jack Doyle is poised to make his First Communion this year at Akron's St. Vincent Catholic Church.
Get the full article here.
Comments
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akron, oh
Posted 12:12 PM, 01/26/2009
an extremely rare genetic disorder affecting only about 200 people worldwide.
Wow talk about obscure. Good luck raising funds for that...
Akron, OH
Posted 01:14 PM, 01/26/2009
That's kind of a callous response, unless I'm misinterpreting your tone. It doesn't matter if it's 200 or 2,000,000. The important thing is that a small child is suffering and the community has a chance to help out.
Posted 04:18 PM, 01/27/2009
Kudos to Summa and all the photographers who take pictures of the baby who is deceased and the family. Having been in that situation-- that is the only memorie we have to hold onto. We have a single professional picture-- and we treasure it.
