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May 27, 2010

Healthy Living looks at a rare condition, brittle bones disease

Today on Healthy Living, we bring to you the touching story of a brave six-year old Anicee Lamoroux. Anicee suffers from a rare bone disorder that has left her severely deformed. But the young girl can now look forward to some major changes in her life. She has been adopted by an American couple, who have also been diagnosed with this rare disorder. Here’s Anicee’s story.

[Anicee sings “Twinkle Twinkle Little Star”…]

Marleni Cuellar, Reporting

Anicee is described by most people who know her as a beautiful and intelligent child with the typical hobbies of any six year old.

Marleni Cuellar

“What’s your favorite thing to do?”

Anicee Lamoreaux

anicee lamoreaux

“Arts.”

Marleni Cuellar

“What kind of arts?”

Anicee Lamoreaux

“Like draw and writing.”

Marleni Cuellar

“What do you draw?”

Anicee Lamoreaux

“I draw a heart.”

As playful and energetic as Anicee appears she has experienced a significant amount of pain; in fact, in her few years of life Anicee has possible suffered near a hundred broken bones. She was born with a very rare disorder called Osteogenesis Imperfecta also known as Brittle Bone.

cecilio eck

Dr Cecilio Eck, Anicee’s Pediatrician

“Osteogenesis Imperfecta is a very rare disorder. It involves basically a disorder with the collagen fibers within the bone. So simply put if these are not made properly, they become very fragile. So you have very fragile dones and they break during very normal procedure or what the books says inconsequential injuries. There are four types; type one is very mild and then you have ranging from very sever to moderately debilitating. There is one which is lethal in the peri-natal period so if this type four is present you will die very early.”

Dr. Eck came in contact with Anicee at the Liberty Children’s Home. She was placed there by the Department of Human Services at the age of two. Delfena Mitchell, of Liberty describes their first encounter with Anicee.

Delfena Mitchell, Director, Liberty Children’s Home

“One of the caregivers that was here told me a story of when she first came they didn’t know if she could speak. For hours she just let them bathe her, dress her, feed her and she didn’t say anything and they were wondering amongst themselves if she could speak. And so when it came for bedtime, they put her in her crib and they turned off the lights and walked away and they heard this voice say: ‘My name is Anicee and I two.’ So then she ran out and said oh she talks, she speaks. So that kind of gives you an idea of Anicee’s personality.”

Her fragile state required extreme caution when caring for her. And when the time came for Anicee to head to school; the reality of the condition became apparent.

Delfena Mitchell

delfena mitchell

“She’s very bright and we knew she had to go to school but we knew that we couldn’t just take her and leave her there because of her condition.  kids could bump into her and she could break easily. So what we did we decided that we will use a caregiver to accompany her to school everyday.”

This would have been a persistent reality for Anicee’s in Belize as a child with special needs. But Anicee’s fate changed last February when Lisa & Chris, a couple from Denver, initiated the adoption process. Lisa and her mother, Diane, are currently in Belize finalizing the adoption.

Lisa Ferrerio, Anicee’s Mother, Diagnosed with OI

“I have Osteogenesis Imperfecta which is brittle bone disease. I’ve used a wheelchair all my life and I’ve had about a hundred or so broken bones same as my husband Chris.”

Marleni Cuellar

“What was it like growing up with this condition?”

Lisa Ferrerio

“It was a little tough for me when I was younger I broke a lot of bones when you get older you don’t. I don’t know if it’s because you get smarter or if your bones get stronger as you get older. But we were at the hospital a lot. I was with my mom and dad in the hospital a lot having casts and surgeries. It was tougher.”

This is a reality that Lisa’s mom remembers vividly.

Diane Holstein, Anicee’s Grandmother

“I gave birth to Lisa on a Thursday evening and when she was born she was born with both femurs fractured and she also had skull fractures so I had cesarean so I didn’t find out really until the next day. The first time I held Lisa she was in a body cast. So the cast was from under her arms to her tiptoes. Through the years we were spending a lot of time in the emergency rooms, she was in physical therapy for a long time and had eight surgeries to put rods in her arms and legs to make them stronger.  She’s the only child I have so I didn’t know any different. It’s just how we spend our days.”

Lisa Ferrerio

“I think when you’re young you’re just kind of use to it. Chris my husband just recently broke his arm at the beginning of the year and he hadn’t for like sixteen years and you forget about it. You forget what it’s like and it’s tough, it hurts really bad. But when you’re young you’re kind of use to that. We have a pretty high pain tolerance so you become use to it.”

Lisa and Chris had wanted to adopt for years and were looking specifically for a child with OI. They felt that they could help both physically and mentally.

Lisa Ferrerio

“Our home is equipped with all sorts of things; ramps and we have an accessible kitchen that I do a lot of cooking in. We have accessible cars and nothing slows us down. So that will be great for Anicee.”

Diane Holstein

“She has wanted this for a long time and I’m excited for her, I know she’ll be a wonderful mother. she is very caring and she is very intuitive and so is Anicee. I think they have bonded incredibly and she’ll be a great mother.”

And everyone, including Anicee couldn’t be happier about the adoption.

Delfena Mitchell

“Everybody is excited for Anicee. It’s kind of bittersweet. She’s been with us for a long time and she was the princess of Liberty but we’re happy for her very, very happy.”

Lisa Ferrerio

“Anicee is a very strong girl so she will be no problem definitely. She reminds us a lot of how we are now and how we were as a child. She’s extremely smart and she’s very strong she’ll have no problem.”

Diane Holstein, Anicee’s Grandmother

“I love this little girl with all my heart. The very first time I saw her, tears came to my eyes when she was introduced to her mother. I have fallen in love with her and I can’t imagine life without her now.”

Dr. Cecilio Eck, Anicee’s Pediatrician

“I think that “Jah” or God has smiled on her. Very few people with this condition in our setting in our country or any third world country live beyond their teens. Much fewer than that would go on to be adopted, much fewer than that would go on to be adopted by parents who have walked her road and have lived and know that despite this awful illness she can become productive and be normal.”

And so starts the journey of a family of three with very breakable bones but an obvious unbreakable spirit.

Marleni Cuellar

“What do you wanna be when you get big?

Anicee Lamoreaux

“A doctor.”

Marleni Cuellar

“And who are you going to fix?”

Anicee Lamoreaux

“The people. Hi daddy! Come back soon!”


Viewers please note: This Internet newscast is a verbatim transcript of our evening television newscast. Where speakers use Kriol, we attempt to faithfully reproduce the quotes using a standard spelling system.

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