Two children with disabilities make life challenging, but full of love
By Tina Snell, Staff Writer
Julie and Rich Langer, who live north of Lastrup, are in need of an adaptive van. Two of their children, Victoria, 8, and John, 3, both have epilepsy, cerebral palsy and are legally blind. A strong Christian faith keeps the Langers strong.
Julie and Rich also have a son, George, 5. All of the children attend school and the task of transporting them there, along with doctors’ appointments and more, makes a van more and more imperative.
Julie and Rich must lift the children from their wheelchairs into their current van. The children will soon be too large for them to lift. An adaptive van would alleviate many of the family’s issues with travel.
“As Victoria and John have grown, we have become more comfortable with their needs and the trips to Children’s Hospital in Minneapolis have become less,” said Julie, a licensed practical nurse.
The new van’s floor would be 10 inches lower than a normal vehicle’s floor. It includes a foldout ramp for wheelchair access. The interior of the van has rear seats and front bucket seats. In between is a large space to accommodate the wheelchairs.
The cost of the van comes to approximately $42,000 plus taxes, license, insurance, etc. Holy Cross Parish in Harding is helping with fundraisers and has set up an account at Farmers and Merchants State Bank in Pierz, called “Victoria’s Van.” There will be a special collection Palm Sunday, April 13, at Holy Cross to help the Langers.
Morrison County Social Services is also working with the family to help purchase the van.
When Victoria was one month old, the family began noticing her seizures. John was three months old when the family realized he also was seizing.
Victoria was eventually seen at Children’s Hospital in Minneapolis and after many tests, was given the diagnosis of epilepsy.
“She was given medications which made her sleepy. It took some time to perfect the dosage,” said Julie.
After she was three months old, Victoria received the diagnosis of cerebral palsy. Many tests later, there was still no link to other known conditions.
Dr. Lawrence Burstein at Children’s Hospital told them that until the Mayo Clinic in Rochester says differently, what the Langer children have would be called Langer’s Syndrome.
John was born in 2010.
“We were told that what Victoria had was not a genetic disorder,” said Julie. But John was born with the same condition and he also now has asthma.
Besides the epilepsy and the cerebral palsy, the two children have rod/cone distrophy which causes blindness, both are nonverbal and they need a gastric tube to ensure enough calorie intake. Victoria and John are also developmentally, cognitively and physically delayed. They require help with personal care and are in need of constant assistance, along with physical, occupational and speech therapy. Their fine motor muscles are not developed and they have uncontrolled muscle movements.
Rich and Julie’s lives are centered around their children. They don’t see any changes for the rest of their lives. Their children need constant care, so much so that Julie quit her job as a nurse when John turned 1.
The Langers’ future will stress Victoria and John walking so they can stay home longer.
“The heavier they get, the harder it is for us to lift them. We need them to walk,” said Rich.
“We take the children to horse therapy, which has helped them learn to walk,” said Julie. “The motion shows them how the body moves when walking. Plus, sitting on a horse strengthens the core body muscles which also helps them to stand and walk.”
Rich said that there are just too many complications in their lives to do anything else. Finances alone have changed since Julie quit her job. The family has given up satellite television and the Internet to save money.
“We kept our cell phones because when we are able to leave the children with a personal care attendant, we have to be able to be reached,” said Julie.
“We are very thankful for those attendants and others who have come to help us,” said Rich. “But there is a lot of stress with the lack of privacy and the turnover of help.”