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Saturday, Oct. 25, 2014

Utah family facing son's rare illness finds strength in Mormon faith

By Megan Christensen, Deseret News

Published: Fri, Aug. 15 5:00 a.m. MDT

 Benjamin Buchanan has a rare genetic disorder called Phelan-McDermid syndrome. His is the only known case in Utah, but he was able to meet 196 other families who are dealing with the illness at an annual Phelan-McDermid Syndrome Foundation conference in July.

Benjamin Buchanan has a rare genetic disorder called Phelan-McDermid syndrome. His is the only known case in Utah, but he was able to meet 196 other families who are dealing with the illness at an annual Phelan-McDermid Syndrome Foundation conference in July.

(Marc Buchanan)

Marc and Chardell Buchanan were concerned when their 2-year-old son Ben wasn’t achieving regular milestones, but they never expected him to be diagnosed with an illness that only affects 1,000 people worldwide.

In March 2012, Benjamin Buchanan was diagnosed with Phelan-McDermid syndrome, a genetic disorder caused by the partial deletion of the 22nd chromosome.

In other words, Phelan-McDermid syndrome is characterized by development delay, lack of speech and a variety of physical symptoms.

“Phelan-McDermid syndrome has only been diagnosed for the last 15 years because of recent blood tests,” Marc Buchanan said. “When Ben was diagnosed, our doctor said he looked in his medical books, and there is only one paragraph written about it.”

Buchanan said Ben, now 5 years old, is unable to speak, has trouble walking, has the cognition of an 18-month-old and is the only known case in Utah.

“The most challenging part of this is not knowing exactly what it means, not having a long-term prognosis and not having anyone to talk with about the disease,” Buchanan said. “Being the only family in Utah as far as we know that deals with it, we kind of have to educate everybody about it we see.”

After years of coping with Ben’s illness alone, the Buchanan’s received a scholarship from an organization called “Angel’s Hands” that sent them to a conference held in Florida hosted by the Phelan-McDermid Syndrome Foundation.

There, they met 196 families who are also affected by the illness.

“It was an instant connection,” Buchanan said. “The kids were making the same noises and falling down and you could tell people got it.”

The Buchanans had many opportunities to learn more about the syndrome at the conference, including more about the research that is being done. They also got to meet one of the doctors who founded the conference.

But one of the biggest highlights was meeting another family who belonged to The Church of Jesus Christ of Latter-day Saints.

“We didn’t know anybody at the conference, but on the second day my wife walked up to someone who looked familiar,” Buchanan said.

His wife didn’t know the woman, Marie Wilson, but they discovered they had both gone to Brigham Young University and were members of the LDS Church.

“Talk about an instant connection,” Buchanan said. “Not only with their son, but we have a shared faith. We hit if off immediately, and we had a deeper understanding that our sons were sent to us for a specific reason that was part of a plan.”

The knowledge that Ben is part of a divine plan nourishes the Buchanans' ability to cope.

Buchanan said it wasn’t easy to hear that Ben may not be able to do certain things in life, but he also knows Ben is who he is supposed to be right now.

“We know he’ll be ours (forever) and he won’t fall into temptations that other children go through,” Buchanan said. “It’s wonderful to have Ben. He’s a very sweet boy.”

Ben’s daily challenges include potty training and his inability to understand consequences.

The Buchanans frequent the emergency room because Ben doesn’t recognize it will hurt if he does things like touch the stove while it’s hot.

Although these things are a constant challenge, Buchanan said they have been blessed by family and ward members.

“We’ve seen a lot of help and love come to our family,” Buchanan said. “In church, we were a little worried when he acted out at 2 years old, but his very first nursery leader took to him, and they didn’t care that he was crying or very loud. That’s continued through Primary.”

Buchanan also feels the support of the nearly 200 families he met at the Phelan-McDermid Syndrome Foundation International Conference.

“Everyone had a varied idea of politics and faith, but because we were in the same situation, we were able to transcend every boundary,” Buchanan said. “I could call any of those families and we’d fight for each other.”

Ben’s illness continues to be a challenge for the Buchanans, but their gratitude exceeds their trial.

“This trial was never something I imagined, but when it comes down to it, I just think we have a unique experience that other people don’t get to have,” Buchanan said. “I don’t know that I’d choose this trial, but I can’t imagine life without it.”

Megan Marsden Christensen writes for the Faith and Family sections. She recently graduated from BYU-Idaho with a bachelor's degree in communication.

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1. Mika Patch
Commerce Township, MI,
Aug. 16, 2014

There is hope. It may not cure or treat, but check into lunasin and Reliv. My friend's daughter with genetic disorder had wonderful results. When she was two and a half, She wasn't taking or walking, and always sick. After getting on the best nutrition, she started talking and walking. Lunasin goes into epigenetic level. Don't know if it is for him, but worth checking into.

2. Kjirstin Youngberg
Mapleton, UT,
Aug. 16, 2014

It's like so many unknowns in life...whatever the question, love is the answer.

3. David Lloyd-Jones
Toronto, 00,
Aug. 16, 2014

Great story of social solidarity with the family: the ward, the neighborhood, the foundation...

Nice when we sometimes do thinks right, hunh?

-dlj.