St. Mary of the Nativity
1 Kent St. Scituate Harbor, MA 02066 (781) 545-3335

56 Broken Bones: Scituate Girl
Thrives Despite Rare Skeletal Disease
by DIANA SCHOBERG
The Patriot Ledger

Hailey Manduca, 7, prepares to celebrate her First Communion on the altar with her dog Independence. (DEBEE TLUMACKI/The Patriot Ledger)

SCITUATE - Hailey Manduca has celebrated her First Communion, a routine milestone for a Catholic girl. But for the 7-year-old Scituate girl, the event Saturday at St. Mary of the Nativity Catholic Church is a miracle.

Hailey has osteogenesis imperfecta, a rare bone disorder often known as ‘‘brittle bone’’ disease. When she was born, she had 16 broken bones and doctors gave her a week to live.

Osteogenesis imperfecta is a genetic disorder that affects 20,000 to 50,000 people nationally, according to the Osteogenesis Imperfecta Foundation. People with the disorder have either too little or poor collagen, a protein which makes up bones.

‘‘My mom said you’d want to know why it was special that I’m making my First Communion,’’ Hailey told a visitor. ‘‘Because I can’t do as much things as other kids, and it’s really painful that I have to go to operations.

‘‘I can’t go on regular swings; I can only go on bucket swings,’’ she said as she laid back in a tiny burgundy recliner bought for her by an uncle. ‘‘I get to do more things than the other kids at recess. I get to have more friends play with me.’’

‘‘They said she wouldn’t walk and wouldn’t talk,’’ her mother, Cheryl, said.

But Hailey, who will turn 8 at the end of May, has proven the doctors wrong even though she has broken 56 bones and had nine surgeries in which metal rods have been inserted alongside the bones to help make them more stable.

Because of the severity of the disease, Hailey also has seizures and is short.

‘‘I am a Little Person of America member,’’ Hailey proclaimed proudly, and listed all the friends she has made in the national nonprofit group. Her favorite television show is TLC’s ‘‘Little People, Big World.’’

‘‘She had a little crush on Zach on that show,’’ said Cheryl Manduca, as Hailey sighed and put her hand on her forehead.

The disorder is passed from generation to generation through a dominant gene.

Cheryl also has the disorder, as do Hailey’s brother, James, 10, and sister, Savine, 11.

No one else in the Manduca family has osteogenesis imperfecta. It arose through a spontaneous mutation in Cheryl Manduca’s cells.

In fact, she and the other two children did not know they had the disorder until Hailey, who has a more severe form of the disease, was diagnosed after doctors found she had broken bones while she was still in the womb.

Cheryl Manduca said she had 20 broken bones from ages 10 to 14, but people failed to recognize that she had the disorder, in part because it was not as well known then.

‘‘They just told me I was a klutzy kid,’’ she said.

When Hailey was born, Cheryl and her husband, Richard, launched a regional support group for people with osteogenesis imperfecta. When it first started, the group had eight members. Now it has 80.

The three Manduca children have partners through Children’s Hospital who run the Boston Marathon for them every year. The runners keep in contact throughout the year by e-mail and phone and act as mentors for the children.

Cheryl Manduca is recovering from a rodding surgery she had last week, and James had a red cast on his arm from a recently broken bone.

But broken bones do nothing to stop this family.

Dressed in a denim overall dress with glittery ‘‘Brats’’ shoes, Hailey demonstrated how she uses her specially trained dog Indie - short for Independence - to help her balance when she walks. Indie accompanies her to Girl Scouts, to religion class, and it even went to her First Communion.

The dog has helped Hailey go to camp and Disney World and play with dollhouses.

For her birthday this year, Hailey is having a Brats sleep-over party with all her friends. They are planning a fashion show with a red blanket laid out so the girls can walk down the red carpet.

‘‘Who will go out first, mom?’’ Hailey asked, then answered her own question. ‘‘The birthday girl goes first.’’

Diana Schoberg may be reached at dschoberg@ledger.com .

This article originally appeared here.

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