Local family faces multiple health challenges, friend launches fundraiser

REXBURG — A young local family is struggling with a variety of major health challenges, and members of the community are trying to help.

The Beckleys live in Thornton, just outside of Rexburg. They are a family of three. Mariana Beckley, 27, is married to Steven Beckley, 28. They both have a child named Xavian, who is 20 months old.

Xavian was diagnosed with rickets when he was six months old. According to the Mayo Clinic, rickets is the softening and weakening of bones in children, usually because of an extreme and prolonged vitamin D deficiency. Signs and symptoms of rickets can include delayed growth, delayed motor skills, pain in the spine, pelvis and legs and muscle weakness.

“As a side effect of rickets, he got craniosynostosis which is when your skull fully grows in and it’s not supposed to do that until you are about three or four years old and so his brain didn’t have room to grow…so they (doctors) had to go in and separate his skull into two pieces,” Mariana said.

Xavian had to have reconstructive skull surgery on Jan. 26.

Mariana said doctors at Primary Children’s Hospital in Utah made an incision from ear to ear and then separated his skull. Right now, he has “distractors” in his head.

“I twist those twice a day and they separate his skull a little bit every day,” she said.

Once a week, Mariana and her son go to the doctor in Utah to make sure Xavian is doing okay.

Mariana told EastIdahoNews.com she was born with rickets and it passed on to her son. It’s a known condition on her mother’s side of the family.

“It passed on through some family members, who have had it. I am the youngest of eight, and I am the only one of my siblings who has it,” Mariana said. “We have a history of it way back.”

Mariana said she was diagnosed when she was three years old. She has had 30 surgeries in her life so far. Her hips down to her knees have had to be reconstructed so that she can walk.

“As I grow, (doctors) have to go in and make sure that everything is growing straight and so they go in and break my bones and realign them,” she explained.

Growing up with rickets has not been easy. There are a lot of limitations since her bones are so brittle.

“I haven’t been able to do things that I’ve wanted to do … I would love to play basketball, but my legs won’t allow me to be active in that way. I can’t really run,” Mariana said. “You have to be very careful with activities. You always have to be thinking, ‘Can my bones handle this?'”

As for Xavian, he will have limitations similar to his mother.

“When I found out that he did have it, it was kind of like alright. I’ve been through it myself and I will take him through whatever we’ve got to go through,” she said.

Through all of this, Mariana’s husband has been dealing with health issues too. They have been from hospital to hospital.

Specialists found multiple cysts on Steven’s pancreas.

“They are waiting for the cysts to capsulate because right now if they were to go in and do anything, what they are worried about is the septic shock. If those cysts drain into his body, it’s potentially life-threatening,” she said.

Eventually, they will go to the University of Utah and have further treatment for Steven. He has been getting treatment from Madison Memorial Hospital.

“It is a lot to take in, but I have a really good family who has supported me and lifted me up when I needed it,” she said.

A friend of the Beckleys, Stefanie Perry, has created a GoFundMe account to help with the challenges they are facing. Steven is out of work and there is currently no financial income.

Perry is hoping to raise $7,500 for the family.

“I know we live in a good area, and I feel like this is a worthy family to give back to or to help out,” Perry said.

Perry says Mariana gets up every day and does what she needs to do, and faces her challenges head-on.

“Money doesn’t fix their health and their physical ailments, but I just wouldn’t want to wish that on anybody to have all of their income stopped,” Perry said.

Mariana said she is relying on family and the GoFundMe. She said she is very grateful for all the help everyone has given.

“I am just extremely thankful for any of those that have donated to our GoFundMe. It’s been a blessing,” Mariana said.