By Dan Howlett @DanHowlett85
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Videographer / director: Brian Henderson
Producer: Dan Howlett, Nick Johnson
Editor: Marcus Cooper
Dorothy Hohl was told there was a 50/50 chance that she would pass on her osteogenesis imperfecta – or brittle bones – to her daughter Savannah but decided to carry on her pregnancy.
Savannah’s father refused to be a part of her life and Dorothy was shunned by her family - but has never regretted the decision.
The disorder comes from a defective gene and means the body does not produce enough collagen leading bones to break and fracture more easily.
As a result of breaks and fractures throughout their lives both mother and daughter are wheelchair bound and stand at 4’2’’.
Dorothy, 57 said: “I like having somebody around who knows what I am going through because I don’t need to explain things to her.
“I don’t need to say that I am in pain – she just knows that I am having a bad day.
“It was a difficult decision to carry on with the pregnancy and I thought on it for 30 days.
“I knew that I got through it and I knew that no matter what the good days have always outnumbered the bad.
“I had never once wished that I had never been born and that was a good enough reason for me to allow her to have a chance at life.”
Dorothy, who lives in Rhode Island, was not sure that Savannah would suffer from the condition until one week before she was born.
“The very first report we got back said they couldn’t find any kind of mutation with me, which is incorrect,” added Dorothy.
“They found it but then when she born she didn’t have any fractures or breaks so I was relieved.
“When I did find out I cried for around ten minutes then I got over it – that’s all I could do.”
Dorothy met Savannah’s father while working for an airline but he refused to be a part of their daughter’s life despite being given the opportunity.
Dorothy added: “I don’t think that men who are forced to be fathers make the best parents.
“I knew that I would probably have to do it all on my own even before I asked him so I had to be confident I could do that.
“I was and I have never regretted it.”
Dorothy worried that Savannah could face the same chronic bullying that she had to while growing up – but her fears never materialised.
She added: “Savannah has been really lucky with her friends but school was tough for me.
“People would throw spitballs at me and call me names and some guys even flicked matches at me and set my shirt alight – it was horrible but I didn’t have the strength to fight them.
“I said to the school nurse – 'I don’t know what I can do, these kids won’t leave me alone.
“She simply said 'Dorothy, you have a voice so go and use it'.
“I can’t remember what I said the next day but everyone was laughing at the ring leader and I knew then that was the way to deal with bullies.”
The pair were inseparable while Savannah was growing up but that changed when she moved to Pennsylvania for college last Summer.
“That was one of the most difficult times of my life,” added Dorothy.
“We’d been together 24/7 for 19 years and now she was leaving.
“I didn’t sleep for a week before she left.
“It was a heart wrenching situation but I knew she had to go – I had a great career and I wanted her to have that opportunity.”
Despite their closeness Dorothy, 57, admits that she was deliberately hard on Savannah when she was growing up.
She claims that she wanted her to be as independent as possible and not have to rely on other people.
Dorothy added: “I knew she was in pain but I knew she could do anything she wanted.
“Able-bodied people do difficult things all the time, they climb Mount Everest – maybe our Everest is getting off the bottom shelf of the upper cabinet in the kitchen.
“That’s how I was raised and that’s how I wanted to raise her.”
Each of Dorothy’s 150 fractures and breaks was monitored and logged by her father while she was growing up – but she tries not to focus on Savannah’s disability.
“I sometimes think he forgot that I was just his daughter, I was almost like a hobby for him,” added Dorothy.
“When she has a fracture or a surgery I just forget it – once it’s done it’s done.
“There will be a medical record somewhere but I don’t think we need to keep a file on it at home.”
Despite never suffering at the hands of bullies Savannah has found dating difficult, a problem her mother can relate to.
Dorothy did not start dating until her twenties and found her teenage years hard to deal with.
She said: ”You’ve got to wait for boys to mature, they need to look at a woman as a human being with a brain - as I got older it got a lot easier for me and Savannah will find that.”
Savannah added: “I’ve definitely got the vibe from guys that my being disabled is a massive turn-off.
“But I understand that dating someone with a disability could be difficult.
“You have to think about so much more, where do you go together, what do you do.
“Sometimes my pain will be so bad that I will have to cancel plans - so I understand.”
Savannah is unsure if she will have children of her own but she is sure that she will instill in them the same independence that Dorothy instilled in her.
She added: “I would love to have children if I am able to or I would perhaps adopt.
“Things won’t be easy but I know that she got to this place and had a great career – I know I can do that.
“I want a great career of my own and to be independent – my mother has taught me that I don’t need to depend on other people.”