2 young sisters, each born with rare disorder, share special bond

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Two sisters, both born with rare disorders, share a remarkable bond that goes far beyond their physical challenges.

Being parents of a child with special needs opens up a whole new world you wouldn't even know exists until you become one. It's an inspiring world, but it can also be very challenging. One Santa Clarita couple accepted this challenge and then some.

All signs were pointing to a healthy baby girl for Rob and Angie Ashe. Doctors didn't see the clues in the ultrasound.

"We did not find out until she was born. It was a surprise in the OR," said Angie. "And it was a blessing actually that we didn't know ahead of time because there's nothing you can do."

Their daughter, Elliot, was diagnosed with a severe form of arthrogryposis, a rare condition that affects about one in 10,000 babies. These children have stiff joints and abnormally developed muscles. The cause is unknown.

"When she was born, her arms were stuck straight out...and they couldn't bend. And her legs were stuck bent...and they couldn't go straight," said Angie.

The treatment required intricate surgery to help get the knees, elbows and wrists to bend.

"What we try to do is position the joints in a more functional position so that the kids can get their hand to their mouth or take care of their personal hygiene," said Dr. Joan Wright, a plastic surgeon at Children's Hospital Los Angeles.

Elliot's condition required several procedures and years of physical therapy -- a daunting thought that didn't scare the Santa Clarita couple, but instead inspired them. Five months ago, they adopted another child with special needs.

"We specifically sought out a child with orthopedic condition because we wanted to be able to utilize all the wonderful doctors we found here for Elliott," said Angie.

In China, they found 2-year-old Fiona. She, too, was born with an extremely rare condition called amniotic band syndrome. While in utero, parts of the amniotic membrane encircled her arms and legs, choking off circulation.

"Sometimes when the parts are banded, they will scar and fuse together so we try to separate those individual toes or fingers," said Wright.

Sisters Elliot and Fiona share a special bond.



So how would doctors orchestrate the series of surgeries the two girls faced and the months of recovery that followed? Wright came up with an ambitious plan.

"She got a little twinkle in her eye and said, 'What do you think about doing it all at once?'" said Angie.

The sisters had surgery on the same day, in the same operating room, with the same doctor. Both procedures were to take four hours each. So when Fiona was done, it was time for Elliott to go in.

"We do full days of surgery typically. So this was a full day of surgery," said Wright.

Five days after that marathon day of surgery, Fiona was racing down hospital hallways in her sister's wheelchair. Once her bandages were removed, she marveled at seeing separate fingers.

And once out of her cast, Elliot will have the ability to bend both her arms. It will take a good part of the summer to recover. Although more surgery awaits both sisters, the two know that no matter what, they'll get through it together.

Rob and Angie Ashe say they consider both their children to be healthy; they just happen to have bones in different positions. All they want is to watch them grow and blossom.

Related Topics:
familychildren's healthhealthy livingspecial needs children
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