Sotara Barnaby is Montana’s 2011 Children’s Miracle Network champion

By Lailani Upham

Sotara Barnaby, Montana's 2011 Children's Miracle Network Hospital Champion. "Happy to be me," she declares. (Shodair Children's Hospital/Helena Photography)

PABLO — With an engaging personality and a smile as big as Montana, 10 year-old Sotara Barnaby has been getting recognition all over the state for her selection as the Montana’s 2011 Children’s Miracle Network Hospital Champion.

On March 24, Barnaby was welcomed to the state capitol in Helena to receive an honor of a joint proclamation of the State Senate and the House of Representatives in recognizing her selection as Montana’s ambassador for the Children’s Miracle Network.

Barnaby’s selection was announced on April 29, in Missoula during a special event at the Wal-mart Supercenter where she received a welcoming celebration and presented with a medal from Shodair along with several gifts and a $500 Wal-Mart gift card.

One of Barnaby’s biggest fans and close friends Miss Montana 2010, Kacie West was present during the shopping spree to support her little friend in her recognition and joy. Unruh said Miss West is a constant support to Sotara. “She shows up for everything that Sotara is involved in.”

West describes her little friend as the happiest girl around and seems to go a mile a minute. “She just lives life with this incredible gusto.”

Sotara shares a hug with Representative Carolyn Pease-Lopez of Billings, who sponsored Sotara's proclamation in the House of Representatives. (Shodair Children's Hospital/Helena Photography)

The day was also proclaimed as Sotara Barnaby Day by Missoula Mayor John Engen.

Shodair staff describes Barnaby as “The happiest girl you’ll ever meet.” Shodair reports that Barnaby suffers from a rare genetic condition called Rubinstein-Taybi syndrome. She was first diagnosed through the Shodair genetics team when she was six years-old. She was evaluated because of developmental delays and her short stature from the start. Her mother, Brandy Unruh said she knew from the beginning there were some developmental delays but didn’t know why she said.

Barnaby’s grandmother Jamie Barnaby, said she began therapy in her home for Sotara immediately at nine months of age.

Barnaby’s challenges has not held her back and in spite of her condition she is reported to be far ahead of the game of others that may suffer from Rubinstein’s, her grandmother stated.

Sotara shakes hands with Senator Shannon Augare of Browning during her visit to the state capitol visit in March. She is accompanied by one of her biggest fans, Miss Montana 2010 Kacie West. (Shodair Children's Hospital/Helena Photography)

Barnaby was diagnosed in 2010 with Rubinstein-Taybi, which gave the family an explanation and understanding for Sotara’s growth pattern and delays.

The young bundle of joy doesn’t let her small stature get in the way. Everyone she meets, she seems to capture their hearts with beams of happiness and barrels of laughter. “She is a delight to have in class and gets along well with her classmates. She is always willing to participate in everything we do. She comes with a smile on her face each and every day,” said her teacher Lorey Jackson at Pablo Elementary.

Sotara and her family will fly to Washington, D.C., in October to meet with the other 51 Children’s Network champions from around the country, and a possible visit with President Barack Obama.

After the D.C. stay the family will then head to Orlando for the Children’s Miracle Network Hospitals Celebration at Disney World.

Sotara Barnaby, 10, fills out a thank you card for the Wal-Mart employees at her home in Pablo. "One employee at the store had given $100 from their own pocket," Unruh said. Sotara loves music and singing, horseback riding along the Mission Mountains, doing physical therapy with her Wii, and going to powwows and dancing. Sotara's grandmother, Jamie Barnaby and parents Brandy Unruh, and Pat Sutherland share in raising and caring of her. (Lailani Upham photo)

Shodair officials report that it has been estimated that approximately 1 out of 125,000 person has Rubinstein-Taybi syndrome, a condition that occurs with equal frequency in both males and females. Symptoms and signs of the condition vary with each individual and can include heart and kidney defects, eye abnormalities, and dental problems. People with this condition also have an increased risk of developing cancerous and noncancerous tumors. There is also an increased risk of leukemia.

One of the symptoms of Rubinstein-Taybi, Sotara experiences is she cannot communicate as easily as other children her age, and this difficulty in communication sometimes makes it hard for her to make friends and be accepted by her peers at school. Undaunted, she faces each day with a smile and is ready to make new friends. “We were all really excited that she gets to go to Washington, D.C and Orlando, Florida. I read the different articles to the class. The articles made me laugh and cry at the same time. I also know how hard it is to understand her and how that must make her feel. I am getting much better at understanding Sotara. I can truly say, Sotara has been a blessing to my class,” Jackson said.

During her visit to the state capitol Senator Shannon Augare from Browning said, “As a member of the Indian Caucus, it is believed you are the first Native American child to be selected in the Champion program. Although Rubinstein-Taybi has created much difficulty in your life, you have continued to make your life, and your world, as large and beautiful as the horses you ride through the Mission Mountains.”

Representative Carolyn Pease-Lopez of Billings, also a member of the Indian Caucus, sponsored Sotara’s proclamation in the House of Representatives said, “I will be cheering for you, and I look forward to hearing more about the ways your courage, strength, and light will continue to positively influence those around you.”

The Children’s Miracle Network telethon will be aired on local television stations on Saturday, June 4 beginning at 4 p.m. More of Sotara’s story will be shared.