Baby boy facing long list of surgeries, needs

Robert Parker Chamberlain

By SALLY BOYD

Gazette Neigh­bors Editor

life@gazettepublishingco.com

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.

Posted by Becky Brooks on Jul 13 2012. You can follow any responses to this entry through the RSS Feed. Both comments and pings are currently closed.