Girl suffers from mystery illness
As part of the annual Press Christmas for All Campaign, we share with readers the stories of the people applying for help. Here’s one of them.
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“Amber” is a special girl, in more ways than one.
Though she’s suffered from a life-threatening illness for most of her life, the 5-year-old remains undiagnosed.
“We’ve done every test known to man and DNA isn’t telling us anything,” said her mom, “Jenna.”
No one has been able to identify Amber’s complex illness. But she keeps fighting.
In June, she went to Seattle for surgery — the eighth major surgery she’s had in her life so far, and one she wasn’t guaranteed to survive.
Just hours after the procedure, she suffered multiple strokes to both sides of her brain. The left side of Amber’s brain was almost “wiped out,” Jenna said, and she now lives with a traumatic brain injury.
Amber remained hospitalized in Seattle until late August. Her parents stayed with her, though they traveled back to North Idaho as often as possible in order to be with their three other children.
Before Amber came home, her belongings had to be moved to the ground floor because it was no longer safe for her to be upstairs. Doctors weren’t sure if she would ever walk again.
Though she’s made more progress than anyone expected, Amber faces enormous challenges. Some of the largest strokes Amber suffered were in parts of the brain that deal with speech and emotion.
“She cries and she says she doesn’t want to be stupid anymore,” Jenna said. “She wants to be able to run again.”
Swimming gives her some relief.
“She’s almost normal in the water,” Jenna said. “She has no limitations.”
Amber lost a kidney in her most recent surgery, and she’s had aneurysms in the remaining one. She’ll most likely need a transplant.
“Either they’ll allow her to have a transplant or they’ll finally put a number on her terminal diagnosis,” Jenna said.
The whole family has felt the impact of Amber’s struggles. Jenna said the other children are sometimes reluctant to leave the house and be parted from Amber, whose health is so fragile.
“They’re afraid it’ll be the last time they’re going to see their sister and they won’t be able to say goodbye,” she said. “You can tell there’s a lot of confusion and mixed emotions.”
The family has sold most of what they have in order to pay for medical bills and frequent travel to Seattle for Amber’s treatment — everything from personal belongings to the business Jenna and her husband spent years building.
“We sell what we need to off our own backs,” Jenna said.
They’re in a constant struggle not to lose their car or their home.
The challenges are compounded because the family doesn’t qualify for most forms of assistance.
“How many families like us suffer?” Jenna said.
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This is the 35th year Press Christmas for All has worked to brighten the lives of Kootenai County residents in need.
Each year, Press readers donate generously to the program. Every penny raised is distributed to Kootenai County residents. All overhead costs are covered by The Hagadone Corp.
The gift recipients are our neighbors who are struggling, including the elderly, disabled, homeless and mentally ill.
Many who seek assistance from Christmas for All are working, but living near or below the poverty level. The beneficiaries of Press Christmas for All are going to keep their dignity intact while the community provides a hand up to help get them back on their feet.
Press Christmas for All is managed by The Hagadone Corp., with assistance from CharityReimagined.Org. It is a legally recognized 501(c)(3) nonprofit, run entirely by volunteers.
Please help. Make your tax-deductible donation today any of four ways:
• Mail a check to Press Christmas for All, 215 N. Second St., Coeur d’Alene, 83814
• Call The Press and make a secure credit card donation over the phone: 208-664-8176
• Go to cdapress.com. Click on Christmas for All 2020 at the top of the page.
• Drop off your check at The Press weekdays between 8 a.m. and 5 p.m.: 215 N. Second St. in downtown CDA.