Placeholder Image

Subtitles section Play video

  • Zoe has broken countless bones.

  • We stopped counting at around 100.

  • -Does it hurt when you break a bone? -Yeah.

  • When Zoe was a really little baby, she would break from the wind.

  • She mostly breaks longer bones. A lot of arms and a lot of legs.

  • The long bones, the ribs.

  • A couple of collar bones, which are very painful.

  • The specialist recommended that we could just terminate

  • the pregnancy and then donate the foetus to science.

  • Grab on to the couch, Zoe.

  • Use your muscles, too.

  • Nice job!

  • Hey, you did it!

  • Zoe's condition is osteogenesis imperfecta, which means

  • brittle bones, and it has nothing to do with calcium deficiency,

  • which is the most common suggestion I hear from strangers.

  • "Have you tried giving her calcium supplements?"

  • "You want to give her some milk?"

  • You think, "She's going to be seven years old. I haven't tried that?"

  • This shade of pink.

  • We were told it was a 1 in 50,000 chance for it to happen to her.

  • She has a mutation in her DNA which causes it.

  • We were told that it was nothing that either of us did

  • 'or have ever done.'

  • And what's that one?

  • 'It was a very typical pregnancy. I could feel her moving.'

  • Everything went by the book, basically,

  • up until the 19-week anatomy scan.

  • We were doing a 4D ultrasound and they were able to see her

  • multiple fractures that were fresh and healing already.

  • She had broken ribs.

  • Her arms and her legs were about six weeks behind

  • what they should have been.

  • So they told us that she had a really severe condition and

  • that she possibly wouldn't make it until her birthday.

  • I'm going to give him some toys to play with.

  • The specialist recommended or suggested that we could just

  • terminate the pregnancy, but it was more than that to us.

  • It was our first child together.

  • We actually did contemplate the abortion that she was telling us

  • that was the only thing that was humane.

  • And then we were in a panicked state.

  • There are a couple of different types of OI,

  • with different severities, and Zoe was misdiagnosed with Type II,

  • the most severe, and ended up...Her genetic results told us that

  • she had Type III OI, which is still very severe.

  • When's your birthday? October 24th.

  • Wow!

  • We went in prepared that Zoe could possibly not come home with us

  • from the hospital, and so hearing her cry for the first time

  • and having such good Apgar scores and not needing oxygen

  • was just the biggest blessing that I could have ever asked for.

  • Can you move this one, please? Thank you.

  • When we were changing Zoe's diaper, in the beginning

  • it took three of us - one person to lift up her pelvis,

  • one person to slide the diaper in and out, and then another person

  • to hold her arms because babies have a startle reflex,

  • and I was on arms duty.

  • I gave her just a little bit of room.

  • It was a quarter-inch to half an inch

  • and she startled into my hand and it sounded like a broken chicken bone.

  • Her radius and ulna just snapped.

  • And lay down.

  • Only a few. Not too many more.

  • 'Zoe has been in her neck brace'

  • from the time she was diagnosed with her cervical kyphosis at

  • about two and a half years old and is still currently in it.

  • A really interesting series of X-rays and scans for Zoe.

  • Here in the first picture was one of the first scans that we got for her.

  • You can really see that the spinal cord

  • is completely compressed

  • back there.

  • Leggies down as flat as you...I got you, honey.

  • 'Now that she's six years old, it's getting quite a bit easier,'

  • with her being able to tell us, "I just broke."

  • Or, "No, you didn't break me." Or, "Hold on. Please, don't move me."

  • Oh, you're using your elbow. Good job.

  • It's so much easier. Yeah. I mean, it's day and night.

  • Nice job! I did it!

  • That was a really great job. Mm-hm.

  • 'Today, we came to Ingle Park to have fun at

  • 'the wheelchair-accessible playground.'

  • Are you excited?

  • Yeah!

  • 'It's one of the only ones in Orange County that Zoe's able

  • 'to play on,'

  • because the ground is made out of foam instead of woodchips or sand.

  • She, especially this playground,

  • she is able to do everything that the other kids are,

  • other than run on their feet.

  • So she can race them just as fast in her wheelchair.

  • Three, two, one!

  • Whee!

  • Yay!

  • 'Sometimes, I worry about her getting hurt, if other kids

  • 'don't know the extent of her condition.'

  • Zoe has a big enough voice, where she will tell someone,

  • "Please, don't touch my wheelchair, please don't push my wheelchair,"

  • and that's very helpful.

  • We have prescription valium, prescription hydrocodone,

  • just in case she does fracture, and all of the splinting supplies

  • to do it ourselves. We've had that since she was an infant.

  • We carry it with us in our bag everywhere we go.

  • Guess what sound we're going to work on. What?

  • S sound!

  • 'She has some little bit of like some structural issues

  • 'with her mouth. She's working to increase her clarity'

  • in her speech, and also some of her language and things like that,

  • so that way she has more clarity when she's speaking and

  • talking to her friends and family.

  • Is she going to do speech with us today? Yeah. OK, show me your S.

  • S. Ooh! You remembered it right away. I like it.

  • Zoe's amazing. She's so fun and she makes everything positive.

  • I see the...soup.

  • OI does not give you a shortened life expectancy.

  • There's no cure for osteogenesis imperfecta.

  • For now, I'm very grateful that there's at least treatments,

  • because even 20 years ago there wasn't as many.

  • I would not change Zoe.

  • If I could take her away, back, I would never ever take it back.

  • In the future I hope that Zoe has just as well of an opportunity

  • as everybody else.

Zoe has broken countless bones.

Subtitles and vocabulary

Click the word to look it up Click the word to find further inforamtion about it