Baby boy facing long list of surgeries, needs
By SALLY BOYD
Gazette Neighbors Editor
A Bellevue baby needs help. A lot of help.
Robert “Parker” Chamberlain was born Jan. 31, 2012, at 34 weeks. As a preemie, he has multiple health issues, including blindness, deafness, a tethered spinal cord, which is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column, an ear tag, and an imperforate anus, a congenital defect which is present from birth in which the opening to the anus is missing or blocked.
As a result of the many surgeries which will be needed to correct his many challenges, a spaghetti dinner and reverse raffle are being held for his benefit on Saturday, July 14, at the Vickery Fire Station, 5076 Co. Rd. 247, Vickery. Doors will open at 3 p.m., with dinners served from 4–6 p.m. Although the reverse raffle is sold out, that portion of the fundraiser starts at 6 p.m. with over $3,000 in cash prizes, along with many others.
There will also be live entertainment all day with Tradewind D.J. performing from 3–6 p.m., cornhole tournaments, and the three-time Battle of the Bands winner “In Theory” taking the stage after the reverse raffle.
Parker’s great-aunt, Lela Kluck, stressed that although the reverse raffle is sold out, there are plenty of other prizes for which people are eligible, including trips to Las Vegas and Myrtle Beach, a 50” flatscreen television, 50/50 raffle, and many, many baskets and other items. In addition, people are encouraged to come for the spaghetti dinner, which is available either for eat-in or take out; tickets for the dinner are $7 for adults, $5 for children ages 3–12, and free for those under 3.
“The community has been phenomenal,” Lela said, adding that the Townsend Ruritan has donated the hall for the event. “In the reverse raffle, nearly every third ticket will win something, thanks to all we have received.”
According to event organizers, little Parker was due March 11, but was born on Jan. 31. He spent his first 28 days in the Neonatal Intensive Care Unit (NICU) at Mercy St. Vincent’s Medical Center, in Toledo, before being transferred to the NICU at the University of Michigan in Ann Arbor where he spent five days before being released to come home to the Charlotte Avenue residence of his parents, Robert and Heather Chamberlain and big sister, Jessica, 11.
Since then, he has been admitted to the Univ. of Michigan Mott Children’s Hospital for a night and taken by LifeFlight helicopter to St. Vincent’s for some infections. He has to be taken to Toledo and the U of M at least once, but more often twice or more a week for his many doctors’ appointments; he is under the care of 14 specialists.
Because he is blind, he will eventually be having corneal transplants to help him see. He already has hearing aids, which are not doing anything for his hearing other than getting him used to something behind his ear for when he receives cochlear implants for both ears.
In addition, Parker will be having surgery to repair the imperforate anus at the end of August, but he first had to gain some weight. Although he was 4 lbs. 2 oz. at birth, he has finally passed the 10 lb. level he needed to start on the surgery path.
In a flyer put out by the fundraiser organizers, little Parker “tells” his story in his own voice.
“I had a rough start and the doctors weren’t sure if I would make it the first night or even past the first week, but I have proven to everyone that I am a tough fighter and can overcome anything that comes my way… Please say a prayer for me and come join my family and friends as they are trying to help raise money for all my upcoming surgeries.”
Parker’s mother, Heather, says the many upcoming surgeries are only part of the financial load the family carries. When Parker was born, she had to quit her 13-year job at Whirlpool to stay home and care for him. Her husband, Robert, is a union electrician working out of Toledo, but is subject to layoffs, which interrupt his insurance coverage.
Because his doctors suspect Parker has a very rare genetic syndrome — one of only 60 known in the world — the family had to undergo very special DNA testing, which had to be sent to a German laboratory, the only place in the world where it could be identified. Insurance will not pay for that cost, nor for the very special high protein formula, which costs nearly $30 per day.
“There is only one brand (of formula) he can use,” said Heather. “He is allergic to the rest. In addition, he has to take special water soluble vitamins as well as enzyme pills which we sprinkle on applesauce before every meal. That is because his pancreas is not working properly. Those cost about $30 per week.”
Heather, who admits she was overwhelmed in the beginning, now rolls with the punches.
“Because this appears to be an extremely rare genetic case, the doctors don’t know his life expectancy. There is no cure, as of now. His heart, lungs and brain are fine, but nearly all his other organs are affected. When we treat a problem with one, it affects another, so we just play it by ear.”
She not only has to deal with the fistula which captures his wastes (without a working rectum), but once a week also has to insert a feeding tube in his nose to give him high doses of the high protein formula needed to get his weight up.
“To me, he is like any other child. He may be blind and deaf, but we treat him like any other child. Besides, I get this opportunity to spend time with him and learn along with him. A wise person told me that if Parker was going to be a fighter, I would have to be a fighter. He won’t fight if I don’t fight with him.”
For those who would like to help, an account has been set up for Parker (in his and his mother’s name — Heather Chamberlin) at Sandusky’s Vacationland Federal Credit Union (or shared branches), account No. 272837.