Jamestown newborn suffers from genetic disorder

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Pictured here are Kelly and Tricia Seckerson, both of Jamestown, and their three children: Jackson, left, Gage, middle, and Clara. Gage, now almost 4 months old, was born with suspected Noonan Syndrome, a genetic disorder that prevents normal development in various parts of the body. Photo courtesy Tricia Seckerson

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It’s literally a 24-hour-per-day task for Jamestown couple Kelly and Tricia Seckerson to care for their sick 4-month-old son.

Tricia gave birth to the couple’s third child, Gage, on Feb. 19. He was five weeks premature and was born with suspected Noonan syndrome.

According to Mayo Clinic’s website, “Noonan syndrome is a genetic disorder that prevents normal development in various parts of the body. A person can be affected by Noonan syndrome in various ways including: unusual facial characteristics, short stature, heart defects, other physical problems and possibly lower intelligence.”

There is currently no cure for Noonan syndrome, but a number of its complications can potentially be treated by surgery, medicine, special education and/or speech therapy.

For Gage, further DNA and chromosome testing still needs to be done, but he is neither big nor healthy enough for any additional tests to be completed yet.

“He’s currently 9 pounds, and he’s actually still considered a newborn because he can’t do things a normal 4-month-old can do like hold his head up,” said Tricia Seckerson, Gage’s mother.

Gage is hearing impaired and is on a feeding tube, something doctors have told Tricia and Kelly he will be on for “a pretty long time,” according to Tricia. He now requires medical care 24 hours per day.

Because it is a genetic disorder, either Tricia or Kelly is the Noonan syndrome gene’s carrier, but testing has not yet revealed which one.

According to a report by Dr. Judith Allanson, doctor of clinical genetics featured on www.noonansyndrome.org, an affected parent has a 50 percent chance to pass on the gene to his or her child. About one in 1,000 babies in the U.S. are born with some variety of Noonan syndrome, making it one of the most prevalent genetic disorders in the nation.

The Seckersons had two healthy children before Gage — Jackson, 4, and Clara, 2.

“This has really changed our lives,” Tricia said. “It really puts things in perspective for us each and every day.”

Gage has been in and out of hospitals ever since he was born.

He spent a total of 48 days in the neonatal unit at Sanford Children’s Hospital in Fargo and Sioux Falls, S.D.

Then in March, he received a blood transfusion and had to be airlifted from Fargo to Sioux Falls Children’s Hospital for surgery.

Gage was eventually airlifted back to Fargo and was released from the hospital to go home on April 7. He has also started therapy at the Anne Carlsen Center in Jamestown for about 20 hours per week.

While the Seckersons do have insurance, Tricia said the medical bills have started piling up.

“Insurance only covers so much,” she said.

The couple have had to almost completely stop working as well to care for Gage.

To help cover some of the medical expenses, friends, family and St. John’s Lutheran Church in Jamestown are coordinating a benefit in Gage’s name.

“As soon as he was born and we found out about his condition, we knew there was a need for something like this right away,” said the Rev. Suzi Orlopp, associate pastor with St. John’s Lutheran Church.

Initially, Kelly and Tricia were reluctant to have a benefit held for them, but after a small bit of convincing, they have been very grateful for the work that has been put forth.

“So many people have been offering to help out and I just can’t thank people enough,” Tricia said. “In fact, they won’t even let me help with most of what is going on.”

Orlopp said it takes a lot for a family to humble themselves and accept help from others.

“They’re just going through so much, and all of us just want to be able to help them and be there to support them,” she said.

Orlopp has been visiting Gage in the hospital off and on since he was born, and said it has been wonderful watching the progress he has made.

“He reminds you of how precious life is and makes you appreciate so many things,” she said. “Just the very small steps of progress that he has taken over these couple months has been incredible.”

The benefit will be held at St. John’s Lutheran Church from 11 a.m. to 7 p.m. on Friday. The cost is $7 and will include a silent auction and baked potato bar.

To donate to the Seckersons, there is a fund set up at Unison Bank in Jamestown under the Seckerson name.

For more information, contact St. John’s Lutheran Church at 701-252-1198.

Sun reporter Brian Willhide can be reached at 701-952-8454 or by email at bwillhide@jamestownsun.com

Tags: community, news, benefit