Helping bring Tyler home
Jessica and Steven Truesdale of Massillon try to put on a happy face. It’s mostly for their children — 7-year-old daughter Dakota and their nearly 7-month-old twin sons, Tanner and Tyler.I met Mom, Dakota and Tanner in December aboard the Cuyahoga Valley Railroad’s Polar Express holiday train ride — a gift to children battling serious illness and their families. It was engineered by retired Akron Police Sgt. Tom Dye and funded by other loyal supporters.Inside the couple, who met in the Army National Guard (Steven’s still a member), there’s a growing knot of worry for the more than $1 million in medical bills they’ve accrued since the twins’ births. The bulk of it centers around Tyler, who is still in the neonatal intensive care unit at Akron Children’s Hospital.From the very beginning, Jessica’s twin pregnancy was at risk because she had only one placenta. It’s called twin-to-twin transfusion syndrome and affects nutrition and blood flow.Jessica was diagnosed at four months, and was monitored weekly with ultrasounds. She said the doctors had to take the babies at 31 weeks because their hearts and brains were in danger.Talitha McGuinness, spokeswoman for the Fetal Hope Foundation, said Tyler and Tanner were born July 14, 2011, weighing in at just over 2 and 3 pounds respectively. Tyler was rushed to Akron Children’s Hospital where he had three surgeries over several weeks on his esophagus, and the lower part was removed. “Since birth, he has had six surgeries to place a g-tube for feedings, a tracheotomy for breathing, removed hernias and the right lower lobe of his lung, and other procedures necessary for his immediate survival,” McGuinness wrote. “He has a rare disorder that one in 3,000-5,000 kids have, when they are born called EA/TEF (esophageal artresia/tracheosophageal fistula). He also has hypothyroidism (low thyroid level), which puts him on lifelong meds, pulmonary hypertension, neonatal seizures, vertebrae anomaly, and atrial septal defect (hole in his heart on the atrial side). There could be more surgeries needed.”Presently, the Truesdales are trying to bring Tyler home, even though that means setting up a mini clinic there. “However, the family has electrical issues, life-saving equipment needs, and minor mold that are preventing his move home,” McGuinness continued.“We have talked about taking him to Boston Children’s Medical Center because it’s the best hospital out there for children, but we don’t know how we would do it with our other two children, my husband’s job and our house,” Jessica has said. “We barely make it now, let alone leaving the state, but it may be an option we have to make down the road.”To help them bring Tyler home or wherever is best for him, a Tyler Truesdale Trust Fund has been set up at PNC Bank (any branch).To learn more about Tyler’s diagnosis and treatment, please visit www.caringbridge.org/visit/tylertannertruesdale.Fundraiser for girlA benefit spaghetti dinner is planned for 4 to 7 p.m. today at Mountain of Hope Faith Church, 6385 Cleveland-Massillon Road, Clinton, to assist the family of 9-year-old Trinity Petit, a third-grader at Erwine Intermediate School in Coventry Township.The daughter of Steve Petit and Tiffany Kaylor, Trinity was active in cheerleading for Coventry youth football before she was recently diagnosed with an inoperable brain tumor.Tickets for the dinner are $8 for adults and $5 for children.Benefit dinner in BarbertonClaire’s Garden/Love for Claire is sponsoring its monthly Swiss steak and/or chicken Marsala benefit dinner from 4:30 to 7 p.m. Feb. 18 at First Presbyterian Church of Barberton, 636 W. Park Ave., Barberton.“After the loss of our daughter Claire to a very rare pediatric disease, we started Love for Claire to help benefit families in our position,” Executive Director Julie Miller said. “We are working on a newborn screening program to bring awareness and education to how important newborn screening is for many childhood diseases. If caught at birth, many diseases can be treated prior to becoming symptomatic.”Miller was recently appointed to the Newborn Screening Task Force under the Genetic Alliance, and is a member of Akron Children’s Hospital Medical Center Foundation Emerging Leaders Advisory Board.Cost for the dinner is $8.50 for adults and $4.50 for children under 10. Advance tickets can be purchased at Claire’s Garden Florist, 3281 Barber Road, Norton. Raffles are also planned.Casino trip sponsoredCassidy’s Hope Foundation is sponsoring a casino bus trip from 8 a.m. to 7 p.m. Feb. 26, to Wheeling Island Racetrack and Casino in Wheeling, W.Va.Cost is $35 and includes $20 in casino cash and $5 for food; there will also be food and beverages on the bus. Please make checks payable to Cassidy’s Hope Foundation and mail to Cassidy’s Hope Foundation, P.O.Box 434, Valley City, OH 44280. For more information, please call 330-483-3232.Cassidy Erin Jackson, daughter of Pam and Butch Czech, was 12 when she died of cancer. In her memory, several programs have been created to promote awareness of childhood cancer and to ease the journey for families whose child is battling cancer. Some of them include helping families with finances, donating to research facilities, and involving several outside businesses who donate services (cleaning, cooking and more).Random acts of kindnessHudson’s Martha “Marty” Hills wants to remind each of us to continue the commitment to “Random Acts of Kindness Week,” which is Feb. 12-18.Hudson has an active Random Acts of Kindness Committee and is serious about spreading the love.Iwo Jima vets to meetFirst Christian Church, 6900 Market Ave. N., Canton, will be the setting for a luncheon honoring veterans of Iwo Jima at noon Feb. 18, commemorating the battle 67 years ago.Cost is $15, must be prepaid before Feb. 10. Donations of door prizes are needed. For more information, please call Jim Woofter at 330-453-0170. Jewell Cardwell can be reached at 330-996-3567 or emailed at jcardwell@thebeaconjournal.com
