Our Miracle Girl, Riley Rose

At just three years old, our beautiful daughter Riley Rose was diagnosed with a rare kidney disease called Nephrotic Syndrome. This condition causes her kidneys to leak large amounts of protein into her urine, leading to severe swelling, dangerously low blood protein levels, high cholesterol, and frequent hospitalizations. Since that diagnosis, our lives have revolved around medications, specialists, and long drives between Boise and Salt Lake City.

But this past year has been the hardest battle yet.

What started as leg pain and what we thought were growing pains quickly turned into something much more serious. Riley began coming home from school exhausted, with no appetite — completely unlike her joyful, energetic self. Trusting my mama instinct, I took her in for bloodwork. While at the doctor’s office, Riley suddenly collapsed and couldn’t get herself up off the floor.

Her bloodwork revealed extremely high calcium levels, and she was rushed to the hospital.

That began a 38-day hospital stay filled with test after test — lung biopsies, kidney biopsies, muscle biopsies, and even removal of a lymph node under her arm. When I say Riley is a medical mystery, I truly mean it.

She was ultimately diagnosed with:

• Granulomatosis with Polyangiitis (GPA) — a rare and serious autoimmune disease that causes inflammation of blood vessels and can damage the lungs, kidneys, and respiratory system. Without aggressive treatment, it can be life-threatening.

• Kikuchi-Fujimoto Disease (KFD) — another rare condition that causes painful swollen lymph nodes, fevers, and extreme fatigue.

Our little girl has endured more than most adults ever will.

We now travel monthly between Boise and Salt Lake for treatments, specialists, and ongoing testing. When the Ronald McDonald House is full, we pay for hotels. I often bring her four-year-old sister with us, as my husband continues working full-time to keep up with mounting hospital bills and provide for our family.

Riley is truly a miracle. She is slowly gaining strength back in her legs, but nerve damage continues to cause significant pain and weakness. We drive to physical therapy three times a week, and the constant travel has added financial strain — from gas to meals to lodging.

We are asking for help to ease the burden of medical expenses, travel costs, hotel stays, and therapy. Most of all, we want to give our girls a year filled with joy after everything they’ve endured. One of our biggest wishes is to take them to Disneyland at the end of the year — to give Riley something magical to look forward to after so many hospital rooms and hard days.

If you feel led to donate, share, or pray for our Riley Rose, we are endlessly grateful. Every bit of support helps lighten the weight our family is carrying.

Thank you for loving our miracle girl.