HESSTON — The Hesston community is rallying around the family of 9-month-old Landon Wallace, who has a rare genetic disorder known as spinal muscular atrophy with respiratory distress (SMARD1).
Landon has a tracheostomy in his neck in order to breathe. His respiratory distress is caused by diaphragmatic paralysis, causing his lungs to be unable to function on their own.
Because of the expense and special equipment needed to care for Landon, his family, friends and others are hosting a fundraiser from 8 a.m. to noon June 1 at Hesston Middle School. The event will include an arts, crafts and bake sale, organized by Landon’s great-aunt, Connie Kramer. “Insurance only goes so far and then it’s self-pay,” Kramer said.
Kramer said she hopes the fundraiser will help to relieve the huge strain on baby Landon’s parents, her niece Emily Wiebe and Shane Wallace, adding: “They have been troopers saying, ‘We’ll figure out how to take care of this baby while we have him.’ We are trying to make their lives as stress free as possible.”
The family was unaware Landon had issues until after birth. It was after some time in the NICU for respiratory problems, followed by bronchitis and four months in Wesley Children’s Hospital that they were given the diagnosis SMARD-1. There are only about 100 known cases of this progressive motor neuron disease in the world.
Landon has been home since mid-April, requiring 24-hour care from his parents, with the help of home health nurses. This includes breathing treatments every few hours, a feeding tube and maintaining the tracheostomy.
Kramer noted that though Landon looks fairly healthy, the effects of the disorder are significant. His legs have atrophied so he cannot move them. He moves his arms, but in uncoordinated ways, unable to grip.
Landon’s mom stays at home, while his dad works nearby in case of an emergency. They also have a 9-year-old son, who “just loves his little brother and tries to help out where he can,” Kramer said.
If you wish to donate arts, crafts or baked goods to the sale, call Connie Kramer at 316-655-8429. People may also make a direct financial donation to Citizens State Bank in care of Emily Wiebe.