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Living Large

This Arizona family won’t let DNA, stature, brittle bones or wheelchairs get in the way of living.

Clockwise from top left: Richard Alexander, Johl Driscoll Jacob Driscoll, a dog Riauna rescued, Riauna Driscoll, Jeena Driscoll, Spirit and Lauri Alexander.
Clockwise from top left: Richard Alexander, Johl Driscoll, Jacob Driscoll, a dog Riauna rescued, Riauna Driscoll, Jeena Driscoll, Spirit and Lauri Alexander.
Photo courtesy Lauri Alexander

If Lauri Alexander could stand, she would be about 3’9” tall. But she can’t stand without support, and she can’t walk. She’s 49 now, with graying, sandy brown hair that reaches down her back. Her direct green eyes are set behind wire-framed oval glasses. Motherhood, brittle bone disease and congestive heart failure have taken their toll on her fragile body.

She was born with osteogenesis imperfecta, more commonly known as OI or brittle bone disease. It renders the bones so frail they snap like twigs, affects stature and causes walking problems.

But Lauri always yearned to be a mother to both biological and adopted children, so against medical advice and the strong possibility of passing on her damaged DNA, she bore two children and adopted two more. Despite her disabilities, she took on seemingly impossible personal, medical and societal challenges to become a mother.

Brittle Bones

Lauri Haws was born in Mesa, the oldest of three children. Her father worked for a telephone company and her mother worked for Motorola. Her family moved to Utah when Lauri was a small child because her medical needs couldn’t be met in Arizona. She received treatment in Utah for five years before she moved back to Mesa after her parents divorced. (Her mother remarried and had four more children.)

She claims she was one of the first kids with a disability to go through Mesa Public Schools. At the time, she said in one of several interviews, most children with disabilities went to a special-needs school. Because she was a child with a disability in a school with mostly able-bodied students, she faced many restrictions. She couldn’t, for example, play on the playground or eat in the lunchroom.

“When I was in school, I was told, ‘Oh, O.K., well, you need to adapt to your environment,’” Lauri said. “And nowadays, it’s, ‘How can we have our environment adapt to the needs of these kids (with disabilities)?’ It’s a complete 360.”

Lauri graduated from Mesa High School in 1980. Around that time, a friend introduced her to Scott Driscoll, an able-bodied factory worker. The 18-year-olds dated for several years. She became pregnant three times, and she miscarried twice.

When Lauri became pregnant for the third time in 1984, she had been preparing to go on a 30-day tour of Europe through a program at her school, Mesa Community College. She was expecting another miscarriage. At 13 weeks, she visited her obstetrician.

There was a heartbeat.

Lauri and Scott married after their first child, Riuana, was born with OI.

Riauna Driscoll
Riauna Driscoll
Photo courtesy Lauri Alexander

“Meant to Be”

A person has a one in 20,000 chance in the U.S. of being born with OI. The disease is caused by genetic defects that hinder the body’s ability to make collagen, the major protein of connective tissue, according to Petra Harvey, health education specialist at the Osteogenesis Imperfecta Foundation, which funds OI research, education and awareness. Bones rely on collagen for strength and become fragile with deficient collagen or insufficient amounts of the protein.

There is no cure for OI, but surgeries, medicines and treatments help improve life with brittle bone disease.

Lauri knew she had a 50/50 chance of passing down the gene to her children, but she didn’t fear it. She said a doctor advised her to terminate her first pregnancy, but she refused.

“Who better to raise a child with OI than someone who’s been through it all and knows their needs better than anyone else,” Lauri said.

When Riuana was 3, Lauri became pregnant again. But before she could give birth, the couple adopted Jeena, a 2-year-old Korean girl with brittle bone disease.

“It’s meant to be,” she thought.

Their child, Johl, was born shortly afterward – without OI.

Next, the couple adopted Jacob, an 18-month-old American boy with severe OI.

Jacob Driscoll
Jacob Driscoll
Photo courtesy Lauri Alexander

Beginnings and Endings

After 12 years of marriage, the Driscolls divorced in 1996.

They were young when they married, Lauri said, “and at some point you grow up and you go, ‘No, this isn’t worth it.’ And he just was going along a different path and I wasn’t there.”

Scott, who still lives in the Valley, said in a recent telephone interview that he agrees with his wife on the reasons for the breakup. But he doesn’t regret the marriage.

The OI didn’t keep him from wanting to marry Lauri. He and Lauri shared similar views on the joys of having a family of biological and adopted children with or without disabilities.

“The interesting thing about the situation is that my children have a more positive attitude than 50 percent of other people out there,” Scott said. “Everybody has their challenges. Theirs is physical. Although they’re not fully functional compared to the rest of the world, they’re able to care for themselves. Jacob needs a little more help at times, but they live as well as anyone else.”

Jeena Driscoll
Jeena Driscoll
Photo courtesy Lauri Alexander

Both Scott and Lauri have remarried.

Lauri married Richard Alexander in 1997. “The OI wasn’t really a factor,” Richard explained in an interview. “I thought we were meant to be together. I’m not going to say, ‘You know, I really like you but I’m looking for someone single and taller.’ A lot of my decision making wasn’t ‘What am I going to do,’ but ‘How am I going to do this?’”

“There were a lot of things I didn’t realize were going to go on until I was here,” he said. “I didn’t anticipate how much medical involvement there was going to be because I didn’t have any frame of reference.”

“But it was never a question of, ‘I don’t know if I want to (marry Lauri and join this family).’ The OI didn’t affect that,” Richard said.

Lauri was, and still is, a freelance graphic designer. She opened her own multimedia production company and organized Renaissance fairs.

Richard, a computer technician originally from Canada, couldn’t work before he obtained his green card, so he helped watch the kids. And so their blended family began to grow together.

Invisible Visible

The couple now lives in a Queen Creek home with a ramp leading to the front door and a peephole level with the door handle.

One recent day, Lauri was preparing the foyer for a Christmas tree. An upright piano was pushed against the wall. Two tall glass cases filled with collections of dolls and other trinkets stood guard on either side. At the center of the spacious room was a coffee table surrounded by a small couch and two antique wooden chairs. Her service dog sat by attentively.

An hour later, Richard returned from work.

He said he used to be uncomfortable around people with disabilities.

“After a while, you just treat people as people,” he said. “I don’t necessarily see a disabled person in a chair.”

Lauri chimed in. “Once you get to know me, it’s not about being a person with disability. It becomes invisible. It’s just not a part of the situation,” she said.

“That’s always on my mind. Your first impression of me is that I have a disability. So I’m constantly dealing with how you’re dealing with your own inner thoughts about me. I’m the one that has to break that barrier down.”

Richard nodded slowly in agreement.

“(OI) is a part of our life because that’s what we have and that’s how we function,” Lauri added. “But our world doesn’t wrap around osteogenesis imperfecta. It is a small part, a small factor in who we are as human beings and how we live our lives. We still have to do dishes; we still have to do laundry.”

The Family

Meet Lauri’s kids: Riauna, 26, the oldest, is tough as nails. She has 14 facial piercings. She suspends in the air from hooks in her bare skin at fetish events.

Johl, 22, and the only sibling without OI, plays guitar in a band and is often teased by his family for being “the severely normal one.”

Jeena, 24, is a recent ASU graduate who radiates cheerfulness and crinkles her eyes when she smiles. Jacob, 20, is a competitive fencer.

Riauna, Johl, Jeena and Jacob consider theirs a normal family. They say the OI and adoption are “just the way it’s always been.”

“In most families, you’re the odd one out if you have OI. But since there’s several of us that have it in ours, it’s made us closer. They understand. You’re not the only one dealing with it,” Riauna explained.

‘Chair, Ramp, Repeat’

Jeena was helping her mother and younger brother out of their white handicap-accessible van.

Jeena, who is 3’6″, whizzed around on foot to assist Jacob and his mother out of the vehicle.

Lauri drove her electric-powered chair onto the bulky metal ramp that lets her in and out of the van. Under Jeena’s operation, it made a whirring sound and lowered Lauri and her chair her to the cement. They repeated the process for Jacob, and in a few moments, he was alongside Lauri on the sidewalk.

“Chair, ramp, repeat,” Lauri laughed.

Jeena continued the unloading process. She went up, down, in, out, over, under, pushed chairs, held buttons, and closed doors faster than you could keep track of what she was doing or where she was going.

She was jovial about it, too. She didn’t mind when one of Jacob’s wheels got stuck on and wouldn’t budge. She just looked for the cause of the blockage and joked at him to “get going!”

Though the whole process took no more than 90 seconds, it’s far longer than the five seconds it takes most people to get or out of a car.

“We can do almost anything anyone else can,” Lauri said with an expression that dared you to say otherwise. “It’s just in a different way.”

Broken Bones and Insults

Riauna goes by “Gimp” and has piercings on her ears, cheeks, eyebrows, nostrils, lips and tongue. Her hair is shaved into a mohawk and often dyed different colors. Her left forearm is decorated with subdermal implants, a form of “body modification” that entails inserting implants beneath the skin.

She loved being the oldest child and thinks that her brother Johl was harder to raise because he was so rambunctious. Lauri remembers having to call the neighbors to get him down from the top of the refrigerator.

To Riauna, her siblings are just her siblings. She didn’t notice the difference between her adopted siblings and her biological brother while growing up. But she does remember when Jake joined the family.

“He couldn’t sit up, so he would be lying down on the floor all the time. We called him ‘speed bump,’” she said with a laugh. “And when he played video games, his arms couldn’t reach across to hold the controller right, so he played with his mouth and his hands. He would kick all of our a—s. He would hit the buttons with his tongue. He was really, really good at it.”

Riauna figures she has had a surgery a year until she was 16 or 17.

“I’ve got rods in the middle of the bones of my upper and lower legs and arms,” she said, pointing to each body part that conceals hidden metal. “Then I have a spinal fusion. We have scoliosis real bad so our spines are real twisted. They pretty much attach wires and try to straighten it as much as possible. They go all up and down my back.”

All three of the OI siblings have endured multiple surgeries, many of which involved inserting metal rods in their bones. Rods, wires, pins and other metal inserts strengthen and straighten their bones. Their bodies are scarred, and they’ve learned to deal with injuries.

“If you get a broken leg or something, you learn how to move around that fracture so you don’t put any weight on it or damage it more,” Riauna said.

Dealing with hate is another matter.

Riauna spent part of the fall working at a haunted house. Because of this, she received a post on her Facebook wall from a stranger. It read:

“Its sad to see u exploit yourself to try and gain acceptance from other low life scum and you pretend to enjoy it. Anyone thats nice to you just feels bad for you that your such a tool. I got an idea though for your next piercing, push a piece of rebar up your nose and pierce your brain with it, your “friends” will dig it and hopefully you’ll die afterwards from an infection … Anyway I gotta go vomit now from thinking about your deformed ass excuse for a human being. Later man…woman? Fleshmound thing?”

Riauna’s reaction?

She laughed.

“That post was the worst thing that probably ever happened (in terms of hate mail) – and it was…. stupid,” she said, shrugging.

So she turned the insult into her own joke.

“I actually changed my Facebook name to ‘Fleshmound Thiing’ (sic). I even rocked it at the haunted house, screaming ‘I’m the Fleshmound Thiing!’ to scare people.”

Johl Driscoll
Johl Driscoll
Photo courtesy Lauri Alexander

The Rock Star Brother

Johl is the “rock star” brother, according to Jeena. He’s the only sibling without OI, and he’s important to the family in many ways. For instance, he would pour milk on his siblings’ cereal because the jug is too heavy for them to lift.

He said he has never felt burdened, and he’s quick to point out the ways in which his siblings are stronger than he is.

“It’s like if you go blind, all your other senses are going to sharpen a little bit,” he explained. “I think it’s the same with my family. You can’t walk, so all your other abilities increase a little bit.”

When asked if he’s ever felt guilty about being the only Driscoll child without a disability, he quickly says no.

“I got the good genes – except for my teeth,” he joked.

‘What am I Doing Wrong?’

Jeena was 2 when she was adopted from Korea, and Lauri and Scott didn’t anticipate how hard it would be when she came to Mesa to live with them.

The first six months were rough, Lauri said. She thinks Jeena was often carried or left in a crib because she “didn’t understand gravity.” She would fall off the couch and hurt herself. There was also a language barrier. And Jeena didn’t like American food.

Niether it seem that Jeena liked her new mom. During one tantrum, Jeena flailed her arms and struck a bed. The bone dangled in its skin.

“It was hard for me because I took it really personal. I thought, ‘I’m failing, she doesn’t love me; what am I doing wrong?’” Lauri remembered.

Soon after, Lauri called their caseworker and told her, “I can’t do this anymore. She has to go back. Come and get her.”

But the caseworker understood culture shock and urged patience. Six months later, Lauri and Jeena were on better terms. Jeena stayed.

Getting Stronger

Jacob was the final child to join the family, and his strain of OI was the most severe. At 18 months old, he weighed 11 pounds. Lauri remembers meeting the caseworker and the baby at a restaurant. The caseworker was playfully tossing Jacob in the air and catching him, but Lauri could immediately see that the baby was in pain.

“If I don’t take this kid home, then he’s not gonna make it,” she thought.

Jacob’s bones would snap under the slightest pressure. Within the first sixth months of living with the Driscolls, he “broke” seven times. When he got the hiccups, the family scrambled to get him to drink water to stop them before he broke a rib.

He battled asthma and used an oxygen tank. His arm would break from hitting the floor when he was rolling around. He has required a medical attendant since birth.

Jacob remembers being “wrapped up all the time” in Ace bandages, splints and casts until, at about age 11, he started taking Pamidronate to increase his bone density. His bones became significantly stronger, and Lauri doesn’t think he would be alive today without the medication.

“He couldn’t sit up at 8 years old. One treatment later, he was able to sit and play for 20 minutes in the seated position,” she said.

After six months and two treatments, Jacob returned to a clinic he had previously visited to get a seat for a wheelchair. When he had originally been fitted, it was for an electric wheelchair. When he returned, it was for a manual one.

Jacob isn’t afraid of breaking bones anymore.

“Take me skydiving; let’s go right now,” he joked.

Quicker, Faster, Smarter

On a recent day, Jeena and Jacob rolled into the green gym of a student recreation center. They passed groups of fencers jumping, jabbing, dodging.

The two slowly pulled on their gear while greeting the other members of the Grand Canyon Seated Fencing Foundation.

Jacob, who is normally quiet, doesn’t break out of his shell when he fences – he practically explodes through it. He laughs through most of practice – rich, deep laughs that come up from his belly and make him throw his head onto the back support of his chair.

Fencing has helped him build strength and stamina.

Jacob is quick with his weapon. His arms are shorter than most of his opponents, but he’s fast. As he waits for the referee’s signal to start, his eyes glow in anticipation behind the shield of his mask.

When he fences, it doesn’t matter that he has severe OI. His goal is to be quicker, faster, smarter than the person sitting across from him.

“Point, Jacob!”

Family Matters

Lauri understands all too well what her children face.

Recently, Riauna was in a car accident and suffered a broken leg. Lauri described the subsequent surgery this way:

“The doctor had to open up her leg, open the muscles, clean the bone, put a rod down the center of the bone, put a piece of donor bone over the top of it and mount that donor bone to her bone so it… holds it like an internal splint basically.

“Manipulating the muscles, tearing the muscles open and having to sew them back together causes a lot of pain. And to be honest, muscle pain can be a whole lot worse than bone pain. Bones have the most sensitive nerves in them, so when you fracture one and you have to have things manipulated, it’s incredibly painful. But once you get that bone stable and it’s immobilized, it’s pretty good.

“But the swelling and the muscle tissue and the healing from being lacerated, that all hurts and muscle spasms become the problem. Muscle spasms grip the bone because they’re protecting it, and they just squeeze that bone, and often it feels like it’s just pulling the bone apart and there’s nothing you can do. Those muscles spasm like that and they just squeeze and squeeze and pull.”

Those are the clinical details. Far more important, Lauri said, is how the family responded.

“Everyone’s been right there,” she said. “Everyone has been calling and asking how she’s doing. Her brothers and sisters have been saying, ‘What’s going on, keep me up to date, I need to know.’

“We’re still a very tight and a very close unit. We’re always there for each other.”