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Two Brothers, Four Transplants, One Strong Family

November 25, 2020  |  Patient Stories, Transplant Post Comment

Logan (left) and Connor Brown at Turnagain Arm in Alaska. The brothers have both received kidney and liver transplants at Seattle Children’s.

“I hate to tell you this, but your son needs a kidney transplant.”

Those words left Rob and Patty Brown dumbstruck.

It was October 2008. That day their 6-year-old son, Connor, had complained that his feet were cramping during hockey practice. Later that evening, his hands and feet completely locked up — a condition called tetany.

“We raced him to the emergency room thinking it was just something silly,” Rob remembers.

It wasn’t something silly. Connor was diagnosed with nephronophthisis, a rare genetic disorder that leads to kidney failure.

Little did the Browns know this was just the beginning of a long and frightening journey, not only for Connor but for their younger son, Logan, as well — a journey that would lead to four transplants and would test their strength as a family.

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Kids and Suicidality: The Behavioral Health Crisis Care Clinic Steps Into the Gap

October 8, 2020  |  Mental Health Post Comment

Xander at Meadowdale Beach in Edmonds with Tuft, the family’s dog. Xander began having thoughts of ending his life at age 9, but thanks in large part to the Behavioral Health Crisis Care Clinic, he’s now on the path to recovery.

Xander was just 9 years old when his life took a nightmarish turn.

It started with debilitating headaches, which got so bad that he needed inpatient treatment. The treatment helped, but as the headaches diminished, Xander’s parents noticed a difference in their son.

“He became depressed,” said Stephanie Simpson, Xander’s mother. “He would curl into a ball, was no longer active and couldn’t make it through the school day.”

As if those changes weren’t troubling enough, Xander told his parents something that terrified them: He was having thoughts of ending his life.

Fortunately, Xander was eventually referred to the Behavioral Health Crisis Care Clinic (BHCCC) at Seattle Children’s, where he received a diagnosis and evidence-based treatment that put him on the path to recovery.

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From Stunning Diagnosis to Unexpected Hope: MEK Inhibitor Proves Amazing for Grace

July 14, 2020  |  Cancer and Blood Disorders, Neurosciences, Patient Stories Comments Off on From Stunning Diagnosis to Unexpected Hope: MEK Inhibitor Proves Amazing for Grace

Despite a lifetime of medical setbacks, you’ll almost always find 18-year-old Grace Carney smiling.

Grace Carney was 16 years old when she first began falling. Before long, she was falling every day. It got so bad that she had to rely on other people — family members at home and aides at school — to help her walk.

For Grace, this was the latest in a lifetime of medical setbacks, many of which stem from neurofibromatosis type one (NF1), a genetic disorder that causes tumors to grow all over the body, including under the skin and on the nerves.

To improve Grace’s ability to walk, a doctor in Spokane recommended a major orthopedic surgery. But as the Carneys prepared for that surgery, an MRI result flipped everything upside down and brought them to Seattle Children’s, where Grace received an innovative medical treatment that changed her life and could do the same for countless others with NF1. Read full post »