Age: 3 years old
Hometown: Spokane, Wash.
Diagnosis: IPEX (Immunodysregulation polyendrocinopathy enteropathy X-linked syndrome)
Kimberly and Brent had already survived the worry and trials of their youngest child, Aiden, being diagnosed with a rare genetic auto-immune disease nicknamed IPEX. They, and Aiden’s big sisters Kaitlin and Hailey, knew what it was like having their family’s life thrown into the turmoil of isolation, separation and uncertainty. The first bone marrow transplant and recovery was supposed to put an end to that scary chapter of their lives.
Just six months old when he was first diagnosed, Aiden proceeded to become an active, happy toddler after his transplant, much to the delight of his family. Seeing the opportunity for a fresh start, the family moved from their long-time home of Logan, UT to Spokane so that Brent could pursue a master’s degree at Gonzaga University.
It was on Thanksgiving holiday back in Utah when the parents noticed Aiden looking puffy. They took him to the emergency room where some tests showed Aiden was suffering from edema brought on by Nephrotic Syndrome. No specific treatment was recommended and they were told it usually resolves on its own in young children. Never wanting to believe anything more serious could again put Aiden’s life in danger, the family travelled back to Spokane to begin settling into their new life.
But symptoms kept presenting in Aiden, and further tests, completed right before Christmas 2011, confirmed the worst: Aiden’s body had rejected the first bone marrow transplant. “We were destroyed,” remembers Brent. “Having to watch him go through everything all over again –it’s not something we want to think about,” says Kimberly.
Learning they would have to repeat the entire ordeal, this time in Seattle, Kimberly and Brent were thankful they had already simplified and prepared their financial situation as much as possible in preparation for graduate school. Still, dealing with Aiden’s illness a second time crashed their well-laid plans. “When we started, we had a house, employment, everything. Now, when we leave here, we will be back at square one,” Brent says.
With the second transplant now behind them and judging from the sparkling smiles that easily emanate from each of the children, it’s hard to guess the stress this young family has endured. “As parents, if your kids are OK, you’re OK,” notes Kimberly, as she lists appreciatively the benefits of living at the House. “Everything that really needs to happen to support families happens here. The girls have been able to do crafts and see movies. The pantry is like a little grocery store. Everything about the House has enabled us to focus on Aiden’s health.”
More than once, the parents mention how comfortable, safe and clean the House is for families. “It takes so much worry away,” says Kimberly. “We don’t have to worry about how we’re going to pay for food, rent an apartment. The overall feeling here is amazing – the level of commitment of the employees and the community…it’s remarkable.”