ILLINOIS CITY, Ill. — Tiny Alayna DeKeyrel battles a developmental disability, but she doesn’t have to fight for attention.

As the 22-month-old little girl  struggles to do things that come  naturally to her peers, Alayna’s siblings, Alexis, 10, Drake, 8, and Douglas, 4, cheer her on.

“Every little milestone she makes, her brothers and sister get so excited about it,” said Alayna’s grandmother, Billie DeKeyrel of Illinois City. “She’s starting to feed herself a little, and they are just praising her.”

Alayna’s mother, Angie DeKeyrel of Illinois City, said her daughter is missing a tiny piece of genetic information that has a large impact on her cognitive and physical development.

When Alayna was 6 months old, she was diagnosed with chromosome 1p36 deletion syndrome, a condition caused when a segment of DNA is lost in part of one of the body’s larger chromosomes. The condition occurs in about one out of every 5,000-10,000 births.

Common features of the disorder include delays in development, learning disability, low muscle tone and distinctive facial features.

Angie, 35, said her family doesn’t know if the effects of the syndrome will be severe or moderate, but for now the little girl is still unable to sit up on her own due to lack of muscle tone and her fine and gross motor skill development is delayed.

Alayna has been attempting to feed herself and is clearly delighted with her accomplishment, said Billie DeKeyrel.

This weekend the DeKeyrels’ friends and family, are hosting a fundraising dinner event to help cover the costs of Alayna’s medical-related expenses.

Angie and her husband, Dana, would like to purchase two important items for their daughter that will aid her in developing skills.

A stander, which costs $3,000-$4,000, will help Alayna learn how to bear weight on her legs, said Angie.

Alayna’s doctor also recommended a Kid Kart, which costs  $2,000-$3,000, because it will allow Alayna to sit up at the level appropriate for a child her age.

Angie and Dana use the Internet to stay in touch with other families whose children have the syndrome and that communication provides a wealth of information and encouragement.

The DeKeyrels have learned of teens who have the syndrome who walk, talk and attend school.

“I believe Alayna will be able to walk and speak some day,” said Angie.

Alayna had two small heart defects at birth, a common side effect of the syndrome, but those have since healed, said Angie. Alayna’s hearing and vision are also fine, although those senses can be affected by the syndrome, said Angie.

“As far as health issues, we’ve dodged a lot of bullets,” said Angie.

Alayna receives treatment and therapy from specialists in Iowa City and Peoria, Ill., and her family works with her at home.

Angie and Dana believe vigilance and faith will help their daughter reach her full potential.

“This is in God’s hands,” said Angie. “I do believe that for everything there is a reason.”

Reporter contact information

Cynthia Beaudette: 563-262-0527

cynthia.beaudette@muscatinejournal.com

Details

Benefit

What: Benefit for Alayna Kay DeKeyrel, a 22-month-old who has been diagnosed with chromosome 1p36 deletion syndrome

When: 5 p.m. Saturday, Nov. 15

Where: Teamsters Local Union Hall 7909 42nd St. W., Rock Island, Ill.

Details: Dinner 5-6:30 p.m. includes pulled pork sandwiches, sides and non-alcoholic beverages available for purchase. Guests can bring their own alcoholic beverages.

Admission: $8

An Alayna Kay DeKeyrel fund has been established at First National Bank in Muscatine, 300 E. Second St.; phone: 563-263-4221

Online

To learn more about 1p36 Chromosome Deletion Syndrome, go to http://1p36.org/