12-year-old Colorado City boy experiencing rare, life-threatening post-transplant condition

COLORADO CITY, Ariz. — Twelve-year-old Zachary Broadbent wanted one last camping trip to Kaibab Mountain with his family before beginning dialysis for a kidney transplant failure. While lying in his tent near his mother in the early morning hours of May 19, his body started seizing.

For the past month, young Zachary, who will turn 13 on Friday, has been lying in a nonverbal state at the Phoenix Children's Hospital. What makes matters worse, his mother said, is not knowing what caused the seizure.

"He'd had some blood test before the trip," Zachary's mom, Rachel Broadbent, told KSL. "(Doctors) said his electrolytes and his blood and everything looked good, except for, yes, his kidney is failing. We already knew that.

"We went to Kaibab and set up camp, and the reason we were even camping was because he wanted to do some things before he got stuck here in Phoenix because there's no other place to do dialysis."

Zachary is the 10th of 11 children, who all live in Colorado City, near the Utah-Arizona border. From birth, he had complications, and his mom said that doctors gave him a 50-50 chance of survival.

"He was born with (posterior) urethral valves," Broadbent said. "Doctors asked me if I wanted to keep fighting for him, and I was like, 'Are you kidding? Of course I'm going to fight for him."

Posterior urethral valves block the normal flow of urine. This blockage greatly affected Zachary's kidney function from the time he was born. It wasn't until he was 2½ years old, however, when he started to have signs of kidney failure.

"We knew one of his kidneys didn't work at all from birth, and that the other kidney was working at about a fourth of what it should," she said. "We knew between the ages of 2 and 20, he would sometime have to do a kidney transplant."

The road to needing a transplant began when he was 2½ years old, when what his parents suspected was a cold turned out to be a kidney infection. Over the next several years, he would be plagued with kidney and bladder infections that would require nearly 20 total Life Flight trips.

Four years ago, however, he was finally able to receive a transplant for one of his kidneys. Six months later, due to constant infections, his second kidney was removed entirely.

"You are always in a state of rejection when you get a new organ, so that's why they give the anti-rejection meds," his mom explained. "(Zachary) has been in acute rejection for at least the past two years."

Despite this, Zachary has done his best to live a "normal" life. His mom said that he loves to go fishing, read and write and would often join her at local farmer's markets selling baked goods. He attended a private school and just completed sixth grade.

"Zach has always been a very 'normal' kid," his mom said. "If you didn't know that he was in kidney failure, you would never know."

Finding the balance between keeping Zachary healthy and being able to experience normal life, however, was a challenge for his parents and siblings, but they did everything they could to manage it — including always bringing the things he needed along with them on camping trips.

"We went to bed (on May 18), and I decided to put him in my tent," Broadbent recalled. "It was a little bit on the chilly side, so I had a little heater, and he was on a cot. Every day of his life, he's hooked up to like a feeding tube just to help him grow, not because he can't eat. He also has a catheter in at night.

"We were doing all these things," she continued. "I woke up about probably midnight or so, and I asked him if he was cold, and he said, 'a little bit.'"

She added more blankets, started a heater and went back to sleep.

"And all of a sudden, I woke up to a ratcheting sound and weird noises," she said. "I flipped on my flashlight, and he was in a full-on seizure. I've never actually witnessed a seizure before."

Two other women who were camping with them were former EMTs, and they helped get Zachary into a truck. He was rushed to a hospital in Kanab where he was Life Flighted again to Phoenix Children's Hospital.

In the past month, his mom said he has been tested for over 70,000 viruses, had MRIs, spinal taps, CT scans, as well as a brain biopsy. Broadbent explained that doctors found a "liquidy cancerous" substance on his brain but still don't have definitive answers to what caused the seizure.

She explained that doctors believe that Zachary could have central nervous system post-transplant lymphoproliferative disorder, which is a condition in which white blood cells multiply rapidly following an organ transplant.

"It's so rare to have (post-transplant lymphoproliferative disorder) in the brain, so none of the children's doctors here have ever seen it in the brain before," Broadbent said. "That's how they didn't know what they were looking for. It's not a mass, and they can't call it true cancer because it's not a mass."

Broadbent said that for the past month, she has been separated from her other 10 kids and husband, aside from a few short visits, and there is no end in sight.

"One neurologist told me that there's a pretty good chance he can come back from this, and then another one has told me that they don't know because they've never had a case like this," she added.

The Colorado City community has been raising funds, including holding a recent volleyball fundraiser, to help ease the financial burden, which she said she is grateful for. She also said that there are "so many" needs in her community at this time.

One of Broadbent's daughters set up a GoFundMe* to help her family at this time.

"Through all of this, we recognize that Zach is in God's hands," the GoFundMe reads. "We are deeply grateful for all the prayers; the faith and support of family, friends and community. We are grateful for the efforts of the doctors and nurses who care for him."

*KSL.com does not assure that the money deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisers and otherwise proceed at your own risk.

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