When Illness Strikes,
Caring Counts
Brittany and Brianna,
beautiful newborn twins, delighted their parents as they learned to smile
and coo, crawl around furniture, and discover the joy of having a constant
playmate that looked just like them!
The girls developed like all
other children - until about 15 months of age. Their parents wondered why
they weren't walking. By 22 months, Paul and Danita Baker knew something
was wrong.
At age three, after months of
tests, the girls were diagnosed with Rett syndrome, a rare neurological
disease that causes loss in communication skills and physical abilities.
Breathing difficulties, scoliosis and seizures are common. But most
devastating of all, the Bakers learned that their daughters may not live
to see their 12th birthday.
"It was like a blow to the
stomach," Danita said. "When we learned that we were going to have to bury
these children, it was the worst day of my life."
In the days that followed, the
Bakers mourned the life that their daughters would miss: high school
boyfriends, prom, college graduation, careers, and, someday, children of
their own. "One of us had to get strong real fast, and that was going to
be me," Danita said. "We knew what was going to happen, so we asked
ourselves, 'Now, what do we do?'"
The Bakers say they have
accepted a new way of life for their girls, who are now nine years old,
and are striving to make their lives as normal and happy as possible. With
two younger children besides the twins, the family turned to in-home
support from Lutheran Social Service for assistance.
Gradual losses in abilities
for the twins mean that they are unable to speak or manage personal care.
They need help with bathing, dressing, stretching exercises and meals. Two
years ago, the girls could walk independently but now get around in
wheelchairs and need lots of physical support to manage daily activities.
Terry Weller and Deb Breitbach,
from LSS, offer 12 hours of in-home support for each child every week.
They arrive at the Bakers' home in the morning to help the twins get ready
for school and go with them to school to maintain their continuity of care
and support. They also take the twins to weekly religion classes at a
local Catholic church as well as on shopping trips or other events.
Because outings with all four
children can be unmanageable alone, while her husband is at work on their
turkey farm, Danita says she appreciates having another set of hands to
help with transportation so that everyone can go together to the park or
out to a movie, as other families can.
"We get to do normal
activities as a family that wouldn't otherwise be possible, without LSS,"
Danita explains. "Managing all of the personal care for the twins and
caring for two other small children besides can be overwhelming. Most
nine-year olds can do things for themselves so that their parents can tend
to their other children's needs. With help, I can be a mom and not always
a physical therapist."
"Working with these children
has been an eye-opener," explained Terry. "I look at people with
disabilities differently now. It's rewarding to help these girls be with
their peers and lead as normal a life as possible. This disease could have
happened to anyone's children. The Bakers are an inspiring family."
The Bakers gain strength from
other families affected by Rett syndrome by helping to organize annual
picnics and other gatherings with them. Danita is a community speaker on
the topic to help create greater awareness and understanding about the
disease. In their research, the Bakers learned that children can often
live into their 20's and beyond, which gives them hope.
Danita says that the Belgrade
community has been exceptional in embracing the entire family. The girls
get invited to birthday parties, play with friends and interact with peers
at school.
"Everywhere we go, the
community has just been great!" Danita says. "The adults are the key. They
set the example for their children. At church, people speak to the kids
first, before they even say hello to us! I don't think we'll ever move
from this great place."
The LSS In-Home Support
Program provides individualized support to help children and adults with
disabilities to lead full, rewarding lives. In Stearns County, LSS offers
in-home support to 20 children and adults with special needs. Brianna and
Brittany were the first children served in the program's two-year history
in the area. Throughout Minnesota, LSS staff offer support to 129 people
who need assistance with communication skills, mobility, personal needs
including grooming, money management, well-being, household maintenance,
coping skills and involvement in the community.
