Little girl, big challenges — Mother thankful for community support

PORT ANGELES — With her big blue eyes and blond hair in perky ponytails, 3-year-old River Larson elicits comments from strangers wherever she goes.

“People will say things like, ‘Is she a little person? Then add, ‘she’s cute, though,'” said her mother, Andrea Larson.

At 31 inches tall and 31 pounds, with an oversized head and short arms, it’s readily apparent that River is a “little person,” Larson said.

Larson is grateful for the support she has found in Port Angeles for her daughter, who was born with achondroplasia, the most common form of dwarfism.

Leave of absence

Because of the ongoing care River needs for health issues, Larson, a single mother, took a leave of absence from her job earlier this year.

Achondroplasia occurs in one in every 26,000 to 40,000 births, and accounts for 70 percent of all people identified as having dwarfism, according to the Little People of America Web site, www.lpaonline.org.

Dwarfism is defined as a medical or genetic condition that usually results in an adult height ranging from 2 feet, 8 inches, to 4 feet, 10 inches.

There are no other little people in Larson’s family, and she said the finding came as a complete surprise during a ninth-month ultrasound.

“The technician said she was having trouble finding her legs — I just thought she wasn’t very good at her job,” Larson said.

But when River was born, April 26, 2006, in Silverton, Ore., she was diagnosed with achondroplasia.

Larson has two older children. All the family had to learn all over again how to handle an infant.

River’s head, even at birth, was large for her body, so from the start she had to be picked up carefully while supporting her head.

She can’t be picked up by the arms because all her joints have dysplasia, and can be easily pulled out of their sockets.

Her spine is curved, and until she was older, sitting up put too much stress on it.

She was 18 months old before she could pull herself up to walk, a process that was slowed by her bowed legs, pigeon-toed feet, short legs and long torso.

With her large head, balance can be difficult.

“She’s had many bumps,” Larson said.

River now walks well, although she is just learning to jump and has to crawl up stairs.

On the dwarfism growth scale, River is at 50 percent; on the standard growth scale for children she is at 20 percent.

But while daily life with the infant was a challenge, it was at night that Larson really worried.

“It was so scary,” she said. “I slept with my hand on her belly so I could shake her if she stopped breathing.”

Sleep apnea

River had a common malady for infants with achondroplasia, obstructive sleep apnea, which causes them to stop breathing because of their airways being too small or improperly shaped. When they relax, the airway can close.

She was “holding her breath” for up to 15 seconds; a lifetime to her mother.

The unrestful sleep pattern left the infant exhausted.

“She didn’t sleep well, but she would sleep up to 14 hours a day,” Larson said.

She said her pediatrician in Silverton offered no suggestions or solutions.

Larson moved with her daughter to Port Angeles in April 2008, leaving her two older children with their father in Oregon. She has extended family in the area.

Larson credits Dr. Laura Bullen at Peninsula Children’s Clinic for taking her concerns seriously.

“Finally, someone heard me,” Larson said.

Bullen referred River to the sleep clinic at Seattle Children’s Hospital, where they recorded her breathing suspended for up to 28 seconds.

The doctors recommended River undergo surgery to remove her tonsils and adenoids to make more room in her tiny air passages.

She had the surgery Sept. 7 at the hospital, and the results were almost immediate.

“By Day Four, she wasn’t snoring,” Larson said. “She just rested peacefully.”

Larson took a medical leave from her job at Safeway in Sequim before the surgery and was eligible for housing and financial assistance.

Before the surgery, she and River lived in a trailer with no electricity on a farm where she said she was learning sustainability.

That housing was no longer feasible with River’s special needs.

She credits the Housing Authority of the County of Clallam and Serenity House for helping her find suitable housing, and the Housing Resource Center for providing furniture vouchers for Goodwill.

‘This town is magic’

“This town is magic,” she said. “There is help everywhere.”

She also credits workers at Olympic Community Action Programs, the Social Security office and Department of Social and Health Services for coming to their aid.

“They all pitched in to get this taken care of,” Larson said.

They now live in a one-story duplex in Fairchild Heights, on the west side of Port Angeles.

Their pet dwarf rabbit and chinchilla are in cages in the kitchen.

Doctors have suggested River take swimming lessons and tumbling classes to stretch her leg ligaments while they grow, to prevent further leg problems.

After the first of the year, Larson plans to enroll River in the Headstart preschool at Hamilton Elementary in Port Angeles.

“She’s amazingly smart,” Larson said.

River has learned to climb on a chair to reach her mother’s computer, where she points a tiny finger at the little people featured on the Little People of American Web site.

“She’s learning that she’s a little person,” Larson said.

________

Features Editor Marcie Miller can be reached at 360-417-3550 or at marcie.miller@peninsuladailynews.com.

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