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Couple helps others with ill children
Source:
Butler Eagle
Written by:
Connie Pilston Shoemaker
Published:
March 3, 2010
ADAMS TWP — Often the death of a child is so tragic that it can destroy a family. One family has turned its tragedy into a mission to help others.
After their son Jonah died in 2001 of congestive heart failure at age 3, Ron and Mannie Taimuty-Loomis created the Jonah & the Whale Foundation, which recycles medical equipment and formula and distributes organizational binders to parents with chronically ill children.
The binders help parents keep track of treatments and information on children seeing multiple doctors and therapists — as was Jonah, who was being treated for multiple medical issues but not diagnosed with a heart problem until six days before he died.
"The CHF was just ignored until it was too late," Mannie said.
Although the Taimuty-Loomises, now in their late 30s, did document their son's many doctor visits, his undiagnosed heart condition reinforced the idea of communication and record keeping for parents.
Combining her life experience with her bachelor of science degree in organizational development, Mannie and her husband launched the foundation in 2004. Mannie continued her studies by pursuing a master's degree in higher education and has since began work as a special education researcher at Geneva College.
"We were frustrated with the continued miscommunication between physicians and the continued misdiagnosis within the medical community regarding Jonah's condition," Mannie said.
"When a family is dealing with a complex disease or a perplexing disability, the stress and frustration with those involved can be overwhelming," she said.
A short time after Ron and Mannie launched the foundation, two more of their four living children were diagnosed with a rare genetic disease called mitochondrial disease, as first was suspected with Jonah.
Mannie said due to the complexity of the disease and the disagreement within the medical community about diagnosis and treatment, the Taimuty-Loomis family found themselves in a legal battle.
Authorities alleged that Mannie suffered from Munchausen syndrome by proxy, a psychological disorder that compels caregivers to harm their children or exaggerate or falsely report their children's medical conditions.
The two sick children along with a sibling were removed from their parents' care until nine months later, when the couple was vindicated of wrongdoing.
"Although our situation was extremely complex and undoubtedly unique, the entire ordeal led us to re-evaluate the services of the foundation," Mannie said.
"We recognized that with insurance company restrictions, hospital privilege issues and the amount of doctors often needed for complicated diseases, parents were being put in a position of such unimaginable responsibility and accountability.
"The foundation addressed the issue by adding information to the Web site and brochures that would help parents understand and possibly avoid the sometimes catastrophic results of a breakdown in communication between doctors, therapists and educators," she added.
In addition to information on the Web site and brochures, the foundation distributes binders that include a family information card; a pocket for prescriptions and receipts, and medication forms.
"The goal is to support and equip families to protect themselves from difficult hospitals and challenging physicians by communicating more effectively and advocating more responsibly," Mannie said.
The foundation also has a mobile and Web library with books about various diseases and disabilities. Parents can borrow or even purchase the books at a low cost, Mannie said.
"A collection of durable medical equipment is also available for parents who have exhausted every avenue to obtain insurance coverage," she added. Those supplies are often donated by people who have benefited from the organization and want to give back.
Mannie estimates spending 15 to 20 hours weekly on foundation work, with hundreds of people contacting her annually.
Among those are Jason and Jennifer Rath of Forward Township, who contacted the foundation more than three years ago, shortly after their newborn son Austin was diagnosed with a severe form of Hirschsprung's disease.
"It's a disease which results in a baby being born without the ganglion cells in the intestine, making it nonfunctioning. We didn't realize he was ill until he was born," said Jennifer, who is the director of psychology at Children's Hospital of Pittsburgh.
Despite working in a pediatric hospital setting, Rath describes feeling unprepared for having a medically ill child.
"When Austin was born I felt lost. I didn't understand the medical language or how to do all his involved medical care. I was overwhelmed, sleep-deprived, depressed and scared," she explained.
"I originally requested some of the educational materials Jonah & the Whale Foundation provides for families and I was very interested in such a great organization, right in our backyard," Rath said. "I found the educational packet and resource binder they sent me very helpful."
"It can be very isolating when your child is born with a special need. You try to negotiate a new world that is totally foreign to you," she added.
It has been a rough road for the Rath family and Austin, who has endured multiple hospitalizations and surgeries.
"Austin is a typically developing 3Z\x-year-old and now he is pretty medically stable. His medical condition requires an enormous amount of medical supplies each week and dealing with up to four different supply companies to get all the various supplies he needs," Rath said.
The Raths are among foundation clients who also support the organization with their donations of medical supplies.
"It can be a really tough position to be in when you need supplies that insurance won't cover, so we try to help others out when we can," Rath said.
The foundation also receives financial contributions to subsidize its expenses. With such help, Mannie plans to continue her mission.
"Our hope is that the better suited parents are to advocate and communicate, the better the outcome medically and emotionally. We further hope that the extended support for the parents as well as the children involved will help ease the stress and sometimes isolation that may be felt within the family as well as the community."
For more information on the Jonah & the Whale Foundation, call 877-495-6624, send an e-mail to info@jtwf.org or go to www.jtwf.org.
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