The parents of Jaden Brown, age 11 months, who has a lifetime of health crises under his belt already, feel alone in coping with his disorders.
Theres no one to share similar experiences with, no one to talk with about doctors, therapy or insurance, Jadens mother, Christina Brown of Durango, said in a recent interview. I havent found support groups closer than Denver or Albuquerque.
She wants to form a support group here, one that would gather people dealing with Jadens condition, hydrocephalus.
Browns effort is timely because today begins Brain Awareness Week, which calls global attention to neurosciences.
Born April 26, 2010, Jaden weighed 6 pounds, 6 ounces and was healthy. But at his four-month well-child visit, his pediatrician recommended that Jaden be tested for a neurological disorder.
Examinations revealed Jaden had hydrocephalus (fluid on the brain) and hemiplegia (stroke-induced spasticity) on his right side. Surgeons implanted a shunt from his brain to his abdomen to drain spinal fluid that collects in the brain.
Cerebrospinal fluid normally circulates through the brain and spinal cord and then drains into the circulatory system. But when the flow is obstructed, fluid builds up and puts pressure on the brain.
Among the effects of hydrocephalus are learning disorders, decreased motor skills and vision and speech problems. Jaden has cortical vision impairment, which means reduced sight because of brain damage.
Jaden receives therapy from Cindy Kraushaar through San Juan Kids, a Community Connections program. The program serves about 70 tots, from birth to age 3, with similar problems in Archuleta, La Plata, Montezuma, San Juan and Dolores counties.
Kraushaar visits the Browns once a week to work with Jaden on sitting on his own, rolling over and moving his right hand. Kraushaar also massages his shoulders and legs and stretch his muscles.
He tends to have tight muscles due to the spasticity caused by the stroke, Kraushaar said. Since bones grow faster than muscles, a growth spurt will tighten the muscles again.
On her last visit, Kraushaar fashioned a plastic brace for Jadens right hand, which he tends to keep balled in a fist with the thumb under the fingers.
The brace separates the thumb from the fingers and stretches muscles.
Jaden will be eligible for therapy through San Juan Kids only until his third birthday.
By then, the Browns must get a waiver for Jaden to qualify for Medicaid, which is currently unavailable because of family income. The wait is usually two to three years.
We earn too much to receive Medicaid and too little to help ourselves, Brown said. We take Jaden to Childrens Hospital in Denver quarterly for checkups. The visits cost us $8,000 a year. Trip expenses are additional.
Brown, 26, delivers hospital supplies such as linen and nursing-cart items for a Grand Junction firm. Her husband, Ray, 28, is a custodian at Fort Lewis College, which covers 60 percent of his health-insurance premiums.
Both are enrolled in the University of Phoenix online program. He is studying for an associate degree in psychology; she has an associate degree in health-care administration and is going for a bachelors degree in the same field.
The Browns would like to organize a local support group for youngsters with Jadens disorders, their parents and anyone else with the disorders.
In online searches, Christina Brown met Tammy Knight, a Littleton mother with a 26-year-old son with hydrocephalus.
Knight organized a support group in Littleton about two years ago.
Up to 20 people attend quarterly meetings, Knight said by telephone last week. They hear guest speakers from the medical field or share common experiences, she said.
Knight understands the frustration of the Browns.
People are looking for medical information and emotional support, Knight said. They have questions they need answered.
An annual fundraiser walk is held in Denver or Steamboat Springs to benefit the national Hydrocephalus Association, based in San Francisco, Knight said. Steamboat also held a snowshoe race Saturday to benefit the association.