By Nathalie Bonney @nathaliebonney
Scroll down for the full story
Videographer / director: Tom Kolicko
Producer: Nathalie Bonney, Ruby Coote
Editor: Thom Johnson
Mum Lisa, dad Chris and daughter Anicee all suffer from a genetic condition called Osteogenesis Imperfecta or OI, which causes their bones to be so brittle, simply sneezing or going over a bump in the road is enough to break them.
There is no known cure for OI and those living with it experience pain on a daily basis. But in spite of their condition, mum Lisa says in many ways they are just like any other family.
She told Barcroft TV: “Osteogenesis Imperfecta is a brittle bone disease disorder, it’s a genetic mutation that is obviously pretty painful and that is why we are smaller than the typical person and of course we use wheel chairs to get around.
"Our house is different. We have different cars equipped to help us. We have a service dog and we do have different challenges in our lives but we are also just a lot like a typical family as well.”
There are at least eight different known types of OI; parents Chris, 40, and Lisa, 42, both have type three, typified by their short stature, barrel chest and brittle bones. They believe Anicee, who was adopted from her birth country of Belize, has a similar type but suffers more severely.
For 15-year-old Anicee, it’s not unusual to break at least a bone every month. She said: “I usually break two bones per month. I have broken over 200 bones so far.”
“It’s really easy to break a bone. You could just get in and out of your chair and you can break a bone. You can cough and you can break a bone. You can sneeze and you can break a bone.
“OI affects me on daily basis because I break a lot so that’s not normal and so I can’t really do a lot of things; I can’t play sports as much but I am happy as I am.
One thing that Anicee can do – and do very well - is paint.
Anicee said: “I like to paint a lot. I can just express my feelings through my art. I just feel really happy and peaceful.”
At a charity auction one of Anicee’s paintings sold for $50,000.
Lisa said: “Anicee was an ambassador to a children’s hospital and she painted a painting for them to auction off at their gala and it went for 50,000 dollars that night.
“And then the auctioneer said is there anyone that will match that for her to do a second painting and someone raised their hand. It makes me cry.”
Another proud moment was when Anicee met Michelle Obama, alongside her grandma (Lisa’s mum), who she has a special bond with, even giving the former first lady one of her paintings.
Anicee said: “I had butterflies all over. And when she met me, she was like, ‘It’s really nice to meet you’, and she hugged me five times and I was really happy. And then I gave her a balloon painting that I did in Albuquerque.
“She said that my painting was really awesome and that she was going to hang it in the White House, in her office.”
For Anicee though, all she wants is to be treated like everybody else.
She said: “I would like to be treated as a normal person and not be judged because of who I am and I want to be able to do things that other kids do.
“I attend a normal public high school just like any normal person and nobody sees me differently. Everybody loves to help me out and I think that’s amazing.”
Anicee was adopted by Chris and Lisa when she was seven-years-old. Although women with OI are able to carry and give birth naturally, inevitably there are more risks involved.
Lisa said: “It is possible to carry a child if you have OI. It just does not interest me at all. I don’t want any more pain.
“I always wanted to adopt a little girl,I was never interested in having a biological child. When Chris and I got married we always kind of knew that we wanted to have a little girl that had OI so that we can share some of our experience and knowledge with that child and make it maybe easier for them.
“We were very proud of what we kind of accomplished and were able to do.
“We both have engineering degrees and Chris worked at NASA and OI shouldn’t stop you.”
It took the couple two and half years to go through the adoption process for Anicee. They finally got to meet their daughter on Mother’s Day in 2010. Travelling to Belize, the couple had planned to stay there a week but ended up camped out in a hotel for 66 days waiting for the paperwork to come through.
Lisa said: “We landed and drove straight to see her and she was sitting outside her little dormitory in the children’s home. It was this yellow hut building and she was sitting there in her stroller with her bag packed sitting right next to her and it was just an incredible moment
“I knew in that second that was our daughter and it was totally meant to be that way.”
Before their arrival, staff at the orphanage showed Anicee videos of her future mother cooking.
Anicee said: “They showed videos of my mom making macaroni and cheese and that’s what she is known for. And they would send me little dolls in the mail and I was just really, really excited to meet them.”
Lisa and Chris first knew each other when they were just babies and lived nearby. Their mothers would arrange playdates together - Lisa’s mum Diane recalls popping the babies in a hot tub together: “they were each in a little tube floating around. They also did wheelchair tennis camps together.”
After Chris’s family moved away the pair lost touch until their adult years, reconnecting through social media.
Lisa said: “He would come visit me every two weeks flying out from California and stay with me, then eventually he moved here so that we could be married.”
After dating for a year and a half the couple got married in front of 200 guests; their first dance Fly Me to the Moon was carefully rehearsed and co-ordinated in their wheelchairs.
The couple continue to face challenges together – five years ago Chris had a stroke and has reduced movement on one side of his body – but they believe having the same condition makes them better suited as a couple.
Lisa said: “We can understand what the other person is going through. The fears and everything that’s associated with it.”
“I don’t know if we can imagine life without it [OI]. I think that it is a part of me for so long, it’s hard to imagine what it would be like.
"Maybe when I was younger I dream of what it will be to walk, or to have an average person’s experiences, but I wouldn’t trade it because there are so many wonderful things that have happened.
"Chris is in my life because of OI, Anicee is in my life and of course these two things I would never trade.”