Rare Bone Desease/Sharon Newman & Nancy Sando

On an early fall day, Nancy and Sharon Whitmore played kickball in a weedy, vacant lot where the line of newly built colonial homes came to an end.
They heard the faint call of their mom to come in, and they walked home jabbering, the dirt sticking to the tar on their feet. They knew they were in for a good scrubbing for school the next day. Nancy had just started kindergarten and Sharon was in second grade.
Nancy went with her mom to get washed up in the bathroom while Sharon waited in the hallway. Suddenly, their mom screamed. “John! Oh my god, come here! You need to see this!”
Nancy was scooped up and rushed out the door. Her 13-year-old brother was put in charge of Sharon, who didn’t see her sister or mom for another 40 days. She lived on cold cereal and worry.
That fall day in 1964 in Fairfield, Connecticut, marked the end of what the Whitmore sisters considered “normal” childhoods. Until that time, Sharon and Nancy lived an idyllic life. Their stay-at-home mom dressed them in identical stylish clothes, their dad earned “good money” as an aeronautical engineer, and they lived in an affluent subdivision.
Sharon didn’t learn until months later that her mom had found a grapefruit sized lump on Nancy’s neck. The doctors initially thought it was cancer and Nancy was considered a goner.

ONE OF THE RAREST
In fact, Nancy was afflicted with one of the world’s rarest diseases -- fibrodyplasia ossificans progressiva or F.O.P. It’s an incurable disease in which the tissue morphs tissue into bone, limb by limb. Surgically removing the second skeleton is not an option; it sparks even more bone growth. Even a needle prick can inflame the disease.
The disease would consume Nancy’s life, of course, but this story is also about Sharon. In an era of “do your own thing,” Sharon chose to put her ambitions aside and stay home for Nancy. It changed her life in ways she never expected.
Sharon Neumann now lives in Traverse City, working for a law firm. Nancy Sando lives in a sunny home in Petoskey, adapted throughout for her wheelchair.
On a beautiful March day, the two met at Nancy’s home and reminisced about their journey together. Nancy, 47, sits in a “Lazy Boy” motorized wheelchair,” her body frozen in a soft V position. She talks out of a clenched mouth, but she livens up her words with inflection, laughter, and hand movements. She and Sharon often finish each other’s sentences. They are lifetime buds.

HOSPITALS
When Sharon finally saw Nancy in a hospital room after that fall day in 1964, the lights dimmed, and the shades were drawn. Nancy’s skinny little body was puffed up from the infusion of drugs.
Everyone thought Nancy would die any day of cancer. But she didn’t die; she grew stronger. After Christmas, Nancy’s mom, who was trained as a nurse, said, “Nancy doesn’t have cancer. I know cancer and this isn’t cancer.”
She took Nancy to the Doctor’s Hospital in New York City, where Nancy was quickly diagnosed with F.O.P., in part, because the misshapen big toes easily give the disease away. Celebrities—the young Ricky Nelson, Bob Hope, Zsa Zsa Gabor and the mayor of New York City—came to visit Nancy.
While Nancy slept, Sharon wandered the pediatric ward and met profoundly sick kids with rare diseases. Many died. She cried in the early morning or late night, out of sight from Nancy.

TURNING POINT
Sharon, like many siblings of disabled children, became a young adult in short order. From the age of seven, she spent endless hours in research hospitals and talking to doctors about her role as helper. After Nancy was diagnosed, her mother agreed to allow her to serve as a case study at Yale Medical School. For the next 12 years, Yale was a “home away from home” of sorts for the girls.
At the age of 14, Sharon began driving Nancy to her physical therapy sessions (and the beach and McDonald’s). She even brainstormed with Nancy’s therapist on how to place Nancy’s limbs in anticipation of the bone freeze. She softly massaged her lumps at night, the girls naming each one as a mountain—“Can you get Mount McKinley for me?”
The spirituality of both sisters deepened, helping them to cope with the injustice of the disease, as well as the pain—particularly acute when the muscle morphs to bone.
Nancy’s arm and neck froze, but she could still walk and attend school. She earned excellent grades and was a popular neighborhood babysitter.
Yet life was unraveling around her. Her mother, failing to find a doctor with a cure, fell into depression. Her older brother, now in his 20s, was diagnosed with bipolar disorder after getting hit by a car and suffering a concussion. Her father, who grew up in 12 different foster homes during the Depression, began to withdraw. He would ultimately remarry and focus his attention on his new family.
Nancy often heard her parents fight and feared it was a matter of time before her parents’ marriage unraveled. She took refuge in her bedroom, a green oasis filled with plants and animals. Or she’d retreat to the backyard where her dad built a pen for her pet rabbits.
Meanwhile, Sharon, a “gifted” student, was being courted by a number of Ivy League colleges. She was urged by her Outward Bound counselors at school to stage a breakaway and start “living her own life.”
One afternoon, Sharon had spread out her college materials on the kitchen table when her dad came home from work. He told her that if she moved away, there would be no one to care for Nancy, Sharon recalled.
It dawned on her then that no plans had ever been made for Nancy’s lifelong care. “I thought, ‘I can’t go away to college if it means she has to go into a nursing home.”’
She stayed and studied business for two years at a local college.

THE PETOSKEY PAIR
After graduation, Sharon moved to Petoskey and lived with an aunt, and Nancy soon followed. It was a “turbulent” year, she said.
Her parents divorced, and her older brother suffered deeply during his slow recovery from the head injury. “Sharon and I were a family within a family. We had an understanding with each other. I had this disease, but it affected everybody,” Nancy said.
Nancy finished her remaining year at Petoskey High School and took an office job. But a couple of years later, some of the muscles in a leg turned to bone, and the other leg went nine months later.
“I was in so much pain. That’s when I had to stay home all day and endure the pain, which was tremendous. My thighs were huge.”
She was imprisoned in her chair during the day, unable to even turn the channel. “There weren’t remotes back then. Sharon had to come home from lunch and take me to the bathroom and change the channel for me. That was the year I learned to knit,” said Nancy. “I thought, ‘If I don’t do something, I’m going to go nuts.’”
Nancy’s hands still move, and are positioned together, something she had planned out: “When your bones begin to freeze, they freeze in the position your body is in, so you need to be prepared.”
As the phlebitis (inflammation of veins) and swelling subsided, so did the pain, and Nancy began walking again. However, she felt vulnerable out in public since she couldn’t hold out her arms to protect herself from a fall. She needed a wheelchair.
The State of Michigan offered to pay for one on the condition that she attend the State Technology Institute and Rehab Center, a school for mentally and physically challenged people, … and ex-cons.
“I was terrified for you,” Sharon told her sister.
“I had some guardian angels that year,” Nancy said. “I came back more confident. I had goals and knew I wouldn’t sit home anymore.”
Nancy worked for a small business in Petoskey and then opened her own programming firm. She earned excellent money and rode on a public bus, independently of Sharon.
Sharon married and her husband was okay with joining the “Nancy and Sharon” household. They had a daughter, whom Nancy helped care for. All was well.

CHURCH FRIENDS STEP IN
One day, Sharon got a phone call. Nancy’s wheelchair had flipped off the bus ramp and she was hurt. “Don’t move her!” Sharon said. “Call an ambulance.”
Nancy had broken an abnormal neck bone, ending her career at the age of 28. With F.O.P., the disease can go into remission for decades, but will flare with serious trauma. Nancy’s bones began freezing, and she was beside herself with pain.
“I was up all night with Nancy,” Sharon said. “She needed me to turn her in bed. She was in terrible pain. I swear I didn’t sleep for two years. We’d hold hands together, we breathed through the pain, we cried. I just had tremendous compassion and prayed for strength. Meanwhile, I’m trying to keep my job, my husband is feeling neglected, and my daughter is angry because she needs me.”
“She was more a like a mom for me back then,” Nancy said. “Now she seems like a sister. I’d say to her, ‘Don’t go anywhere. What am I going to do?’”
Nancy remembers with gratitude, a physical therapy aide who invited her to attend her small church. A group of church friends saw the need, and pitched in. “They’d stop by, stuff me into a car, and I’d be gone a few hours. They were a godsend,” Nancy said. “We’d go from house to house, play games, sing songs, and string popcorn.”
Nancy’s faith deepened, as did her life challenges. At this time, her older brother died in a flash flood and her mom moved to Petoskey in the early stages of multiple myeloma.
Sharon knew that she couldn’t go on this way, nor could Nancy ever work again. Yet the auto insurance company, the wheelchair manufacturer and the bus company were unwilling to offer any accident compensation for the badly designed wheelchair ramp.
Fortunately, as a law office assistant, Sharon possessed the legal expertise to prepare a case: “It pissed me off. You pay insurance premiums for years, and the insurance company did

everything in its power to bring us down. But we didn’t go down.”
An out-of-court settlement provided Nancy with payment for her medical bills, as well as money for around-the-clock attendants. Sharon felt a burden lift. She finally had help.

I CARE NETWORK
After the case, Sharon, then 30, quit the law firm and began a new career as a public advocate.
Her first order of business was to invest a small inheritance to form the I Care Foundation, a nonprofit to help serve the needs of the disabled. She flew to the University of Pennsylvania to meet with Dr. Frederick Kaplan and Dr. Michael Zasloff to deliver research she had completed on 44 people with F.O.P.
At that meeting, the doctors asked Sharon why she had gifted
U-Penn with her research and had asked them to make a research commitment to F.O.P. patients. After all, she was in Michigan and there was a fine research university in Ann Arbor.
She explained that Dr. Zasloff had evaluated and treated more F.O.P. patients in the world at that time–and that Dr. Kaplan had already demonstrated an equal and compassionate commitment treating F.O.P. patients in the Philadelphia area. It was a no-brainer.
The doctors said they were interested and wanted to help, but were worried about funding.
“The patient community needs you,” Sharon told them. “They’ll become more organized and find ways to financially support your efforts. I am not worried about that. What I am worried about is the lack of quality of life for F.O.P. patients and families until a cure is found.”
The three came to an understanding that the two physicians would stay focused on research and medical care while Sharon explored how to improve the quality of life for individuals and their families.
Sharon traveled the world visiting dozens of people with F.O.P. and meeting with their care providers to help them work together. She also raised money. After meeting F.O.P. patients who desperately needed wheelchairs, she kick-started a national fundraising campaign that brought in $800,000 for power wheelchairs for hundreds of people.
As she visited people with F.O.P., she realized that Nancy’s dogged desire for independence had been her salvation. Others she met couldn’t cope, especially those whose parents had over-indulged their child out of a sense of pity.

NANCY’S PATH
Meanwhile, Nancy met a man named Andy Sando, who also had the disease. They were both getting fit for wheelchairs around the same time at a rehab facility in Grand Rapids. One of the hospital employees suggested to Nancy that they write to each other.
The pen-pal relationship blossomed, and Nancy, who never thought she’d marry, tied the knot at 29.
The two tempered each other. Andy was witty, introverted, creative, but quick-tempered when he felt helpless. Nancy was more conservative, with an unflaggingly sunny nature. They shared a deep faith in God.
In many ways, it was like any marriage. But there were unique challenges. They had to sort the responsibilities of their several attendants and Andy suffered from asthma, made worse by a set of bones draping his ribcage.
Nancy said she and Andy both took an inventive approach when a limb froze up. Nancy’s jaw, for example, had locked up so she could no longer eat. She adjusted by getting a couple of teeth pulled, so she could eat whipped food with a spoon. Andy was a photographer and invented a device that allowed him to shoot his camera.
“Andy and I knew all about loss,” Nancy explained. “Our life has been a series of losses. You don’t lose your whole body, but a piece of it at a time. You mourn the loss, but you get over your grief and just admit, ‘I can’t do that anymore, so I’ll find a new way to do it.”’
After Nancy and Andy married, Sharon moved out and moved on. The years of stress had cracked her marriage. After several years, she moved to Traverse City with her young daughters at the age of 34.
Demands were growing ever greater for international travel with the I Care Network, and were too much for a single mom. She ultimately folded the nonprofit, and now works with the Smith & Johnson law firm. Part of her job involves preparing and researching issues against insurance companies in personal injury cases.

FULL CIRCLE
In the winter of 1991, Dr. Kaplan flew to Petoskey to interview Andy and Nancy. He wanted to know what advice to give parents of F.O.P. kids. Should they allow them to play like normal children, or protect them with pads?
“I told him that you should let a kid be a kid. I have so many memories of the good stuff, and the bad stuff was a blink of an eye. When I was a kid, I rode a bike and jumped rope behind my mom’s back,” Nancy said.
Andy Sando died in 2003 after his decades-long battle to breathe.
On the eve of his death, Sando’s doctor, Dr. Timothy Ismond, suggested that Nancy send his bone marrow to Dr. Kaplan, the very same researcher who Sharon had persuaded to commit to the F.O.P. community nearly 18 years before.
Kaplan agreed to the tissue transfer and Andy’s bone marrow arrived the next day.The DNA results confirmed what Kaplan had theoretically concluded after years of research. F.O.P. is caused by the mutation of a single gene, ACVR1. He hopes that this finding will not only help the 600 people diagnosed with F.O.P., but also those who suffer from bone-related problems, such as the extra bone growth that sometimes occurs after total hip replacements.
Perhaps scientists will harness the gene mutation to make bone in a controlled environment for patients who have severe osteoporosis or bone fractures, Kaplan wrote in an email. “We still have a long way to go, but finally we can see a therapeutic horizon above the clouds, and the view is promising,.”
Sharon’s efforts to help Dr. Kaplan and the F.O.P. had come back full circle. Nancy expects that the gene discovery is too late to help her, and she doesn’t care that much. She’s happy—unbelievably content—with a life that includes lots of visits from her friends, kids, devoted attendants, and the company of her two Shih Tzus, Rascals and Oreo. She knits, uses the computer, and is working with a Petoskey man on a screenplay about her life.
But she hopes that it’s not too late for the young children with F.O.P.
Sharon, 49, believes the toughest part of her life is over. She goes home at night, turns on some music, and enjoys a glass of wine. She still is recognized as a patient advocacy expert among the scientific elite.
“I’m very grateful that everything turned out okay. God has been kind.”


View On Our Website