DOROTHY HOHL: I like having somebody around
who knows what I am going through because I don’t have to explain it to her.
COMM: Dorothy Hohl has osteogenesis imperfecta,
a condition causing brittle bones and stunted growth.
DOROTHY HOHL: It’s a genetic disorder which
affects the collagen in your system. Our bones are very fragile and brittle and they break
very easily, sometimes without trauma.
COMM: Her daughter Savannah also has the condition,
which Dorothy found out just the week before she was born.
DOROTHY HOHL: I cried for 10 minutes and then
I got over it. Really, no that’s exactly what happened. It was like it’s okay, it’s
gonna be okay. I’m okay, she’s gonna be okay.
SAVANNAH LORENCE: I will say to people that
I feel privileged from being born like this because when you are in an accident and you
then have to use a wheelchair, then your whole life is completely devastating and I learnt
how to live one way once. So I think that contributes to some sort of normal life. I
mean it is normal for us.
DOROTHY HOHL: I was born with osteogenesis
imperfecta. There was no history of it in my family at all. So it was a spontaneous
mutation. But Savannah had a 50/50 chance of inheriting it from me.
COMM: Despite that risk and the fact that
she would be raising her baby alone, Dorothy never hesitated to go through with the pregnancy.
DOROTHY HOHL: Personally, I don’t think
that men who are forced into fatherhood make very good fathers. I made the decision that
I want to continue the pregnancy. He said, “I don’t want to” and I said, “that’s fine.”
DOROTHY HOHL: I’ve actually felt the things
that I knew she would be feeling. You know the fear and the pain and all of that, and that’s
not easy to deal with when you know what your child is going to go through but again, I
know I got through it, and I knew that no matter what the good days have always outnumbered
the bad.
COMM: Both mother and daughter are 4’2”
tall and have suffered many fractures.
SAVANNAH LORENCE: It’s hard to say that
like having surgery all the time is a positive experience, when you don’t focus on the
bad stuff, I went to a children’s orthopaedic hospital and I would see the same people all
the time and so there were good things about it.
COMM: Dorothy was raised to be able to take
care of herself.
DOROTHY HOHL: I am really grateful to my parents.
They really wanted me to be independent. My father always said that you are gonna have
to learn to get by in a world that’s not necessarily an environment that was built
for you.
COMM: And she’s instilled the same in her daughter.
DOROTHY HOHL: I have insisted that she do
things for herself and not depend upon other people.
SAVANNAH LORENCE: I would be crying because
I couldn’t figure how to do something, she would say, “No. You just have to figure
it out.” And that was tough when you were young and you feel like your parents don’t
care when they do. They just have to do that to get you learn.
DOROTHY HOHL: I was always very hard on her
like, “Yeah, I know you are in pain, but you can still do it, Savannah. Yeah, I know
it’s hard for you, but you can still do it.”
SAVANNAH LORENCE: Yeah. Exactly.
DOROTHY HOHL: Able-bodied people do things
that are hard all the time. It’s not easy to climb Mount Everest, but people push themselves
and they do it. Now maybe our Mount Everest is getting a plate off the bottom shelf of
an upper cabinet, but that doesn’t mean you shouldn’t try to do it.
COMM: The pair were inseparable when Savannah
was growing up, but last summer she moved to Pennsylvania for college.
DOROTHY HOHL: We’ve been together for 19
years. Every day, 24 hours a day and then all of a sudden she’s not here anymore.
The week before she left, I didn’t sleep at all. I kept waking up in the middle of
the night thinking, “Next week this time she’s not gonna be here”, and it was really,
it was very difficult for me. It was a very heart-wrenching situation.
COMM: But they make up for it when they do
see each other.
SAVANNAH LORENCE: We live on the coast. So
we like to go to the beach together a lot. We cook a lot together. She like spawned my
love of cooking and baking.
DOROTHY HOHL: When she comes home from school,
usually like a week before she is coming home, I say, “So what do you wanna have for dinner,
while you are here? Is there anything special you want me to make?” And we plan out our
meals in advance.
SAVANNAH LORENCE: When I was in the hospital,
she would bring cookies and fried chicken and potato salad and everything, so I don’t
have to eat hospital food.
DOROTHY HOHL: Yes, we share a, an absolute
disdain for hospitals.
COMM: And now Savannah is thinking about what
life may hold after she finishes college.
SAVANNAH LORENECE: I do want kids at some
point. I would like to adopt, I think, probably. Things have been easier because I think she’s
just told me. You know, I know that she got to this place. She had a great career. I am
doing something completely different than she did, but I know that I can still have
a good career, live on my own and be independent and not rely on other people.