At age 7, Calvin Smith will tell you he likes to play Wii games and camp as part of his favorite summer activities. 

This soon-to-be Liberty Lake Elementary second-grader also is gaining more awareness this season about the rare type of dwarfism he has. If asked, he'll clearly recite key medical words for the rare skeletal disorder: Metatropic Dysplasia. 

He's also noticing that friends and neighbors are helping his family with fundraisers to cover travel expenses to see a specialist, said his mother Tanya Smith. Because of his type of dwarfism, Calvin endures joint pain and other progressively worsening symptoms daily, including some signs of spinal compression, so he's now requiring higher-level treatment beyond care he receives in Seattle, she said.

"There are less than 100 documented cases of Metatropic Dysplasia in the world," Smith said. "It affects the long bones, spine and joints, causing dwarfed stature, extreme curvature of the spine, compression of vital organs and joint pain."

Metatropic means "changing shape," and in some cases, the condition leads to paralysis or even death. Calvin has seen a doctor at Seattle Children's Hospital since age 1. In October, he's scheduled to see Dr. William G. Mackenzie, a renowned expert on skeletal dysplasia and musculoskeletal conditions of childhood, at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del.

"While Calvin's been well cared for at Seattle Children's Hospital, not a single doctor or geneticist there has ever treated Metatropic Dysplasia," his mom said. Because Calvin is experiencing increasing pain on a daily basis, his family wants to take him to an expert on the condition, she said, "especially if surgery is eventually needed." 

It's now difficult for Calvin to walk much past a block. Some preventative approaches include special surgeries that straighten the spine and ease the pain. 

"Right now, he has a lot of pain," Tanya Smith said.   

About $4,500 was sought initially to cover travel, lodging, rental car and one fun afternoon for Calvin after two days of appointments scheduled in October with Dr. Mackenzie. Smith said dollars so far raised will pay for airfare for her, Calvin, and his grandmother for that initial visit. Any funds not used will be saved in a specific account for subsequent visits, and toward a wheelchair or other mobility device as needed. 

The family expects Calvin will require visits to the Delaware physician one to four times per year until he is 18. They have healthcare insurance and have been able to pay co-payments for Calvin's past tests and appointments, but the insurance doesn't cover travel costs to see a specialist. 

Among community fundraisers, a June 25 cookie sale at the Smiths' home brought in more than $800, after a Facebook event spread. A family friend who is a professional massage therapist also gave chair massages for donations, offered to people who came by to purchase cookies.

"We had a lot of donations of homemade cookies from friends, neighbors, family," Smith said. "People texted their friends, and also the word got out through our church. We go to the LDS church over here."

To help with his future travel and related expenses, people also are donating directly to the Calvin Smith Benefit Fund at Spokane Teacher's Credit Union (STCU) using ID #346153 in person or at www.stcu.org. Additionally, people can watch Calvin's video and donate at www.youcaring.com/calvin-smith-376968. The YouCaring.com site is an online fundraising and crowdfunding website. 

Smith said a friend, Kelsy McHenry, also has set up a raffle fundraiser to benefit Calvin tied to Thirty One Gifts. McHenry is offering $10 raffle tickets, with the chance to win merchandise items during 31 days of August. Drawings are held each day during the month. For information, people can email McHenry at kelsymchenry@yahoo.com or call 995-8650.

Calvin and his parents, Ryan and Tanya Smith, have lived in Liberty Lake for about six years. Calvin has a sister Clara, 4, and brother Cyrus, 2. The family enjoys camping, movies and visits to Rocky Hill Park in Liberty Lake.

Ryan Smith works as an air traffic controller at Spokane International Airport. Tanya Smith is a photographer, graphic designer and writer. After taking a children's literature writing class, she wrote a book called "Superbrain."

"It's about Calvin and dwarfism," she said. "In the story, he finds out what's special about him, and it's his special brain powers."

Calvin is smart and loves Legos. 

"I like to invent cool symmetrical shapes," he said. "I read at the third-grade level. My favorite book is ‘Diary of a Wimpy Kid.'"

At home, he's often playing with his sister, Clara, and the two are about the same height now, their mom said.

"I think the average for this condition is people stop growing at about the first-grade year. He's not expected to grow much more. Just this year he's starting to notice, ‘Why am I not as tall as my friends? Why can't I run as fast?' So this YouCaring campaign and cookie fundraiser has been good for him to better understand what's going on. He's knowing people care."  

Calvin's family also plans sometime next year to hold an awareness event about dwarfism in Liberty Lake, although details are yet to be worked out. The organization, Little People of America, at www.LPAonline.org,  also provides resources, and Calvin is a local chapter member.

"There are over 200 types of dwarfism; people usually don't know that," Smith said. "Little People of America is a good information source.

"Part of what we're trying to do with awareness is so that kids at his school know more about him, and why he's shorter and slower. I feel like he's really smart and talented. As long as he has the physical care he needs, he'll be able to do great things in his life, like any other kid."

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