The parents of an 18-month-old La Grande child are hoping a fundraising walk will make a difference for their son and 30,000 other Americans with cystic fibrosis.
Candace Salim, mother of Gideon Salim, organized the May 5 fundraiser with the hope it will become an annual event. All funds raised during the walk will be split 50/50 between Gideon and the Cystic Fibrosis Foundation.
According to the Mayo Clinic, CF is an inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body. There is no cure for CF.
Last year, The Observer told the story of Gideon and his family, how they received the first word that Gideon might have CF two weeks after his birth. The family was struggling with the life-changing diagnosis. Candace said she and her husband, David, needed time to accept the reality of their situation.
“David and I had a lot of adjustment,” she said.
She said the support her family has received has made all the difference for them.
“It’s been really beautiful and an honor for so many people to care,” she said.
She explained with such a rare disease, Gideon is the only infant in Union County with CF, making his care complicated.
“Any facility he’s had to use in Union County has gone above and beyond to educate themselves on keeping infection down, keeping him healthy, and what his needs are,” Candace said.
She also said the people at Side A Brewing Co. in La Grande, where David works in the kitchen, have gone above and beyond to support them.
“David has found such an amazing family through Side A,” Candace said. “Any time he needs a day off or something is happening with Gideon, they just move the world for us. I don’t think we would have been able to find that anywhere else.”
Gideon’s care is a complicated process. He needs up to nine medications per day. Candace administers medications and guides him through breathing treatments. He also often requires a technique called “cupping” to clear his airways. Candace said he needs medication or treatments every two to three hours. In the middle of the night, she gives him his medications while he sleeps using a nebulizer machine, which converts the liquid medicine into a mist that can be inhaled.
Gideon had surgery last week to treat fluid in his ears. He also had a bacteria sample taken from his lungs, a procedure he will need yearly. Candace said it was recently discovered that Gideon is nearly blind, and he will be getting glasses next week.
Candace said it can be difficult taking Gideon out in the world, because he is often coughing, which can scare onlookers.
She told a story of a time she took Gideon to see her older son in a Halloween parade at Greenwood Elementary School.
“I was sitting there with Gideon and he was just coughing and coughing and he spit up,” she said. “This lady was like, ‘I wouldn’t have brought my baby here if he sounded like that.’ A part of my wanted to say, ‘Well, he sounds like this every day’ or I wanted to defend myself in some way. That was just my first introduction to the fact that people just don’t understand.”
She said this is why she hopes Sunday’s walk will help spread awareness about CF.
See complete story in Friday's Observer