Imagine suffering a debilitating serious illness, being wheelchair-bound, and pregnant. You are then told that your baby has a 50-50 chance of inheriting the same disorder, and the father decides he doesn’t want to be a part of the baby’s life if you keep it. What do you do?
That is the choice that Dorothy Hohl faced 20 years ago – but the single mother has no regrets about keeping her daughter, despite passing on the rare condition osteogenesis imperfecta, or brittle bones, to Savannah.
‘It was a difficult decision to carry on with the pregnancy, and I thought on it for 30 days,’ says Dorothy, 57. ‘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.
‘When I did find out, I cried for around 10 minutes then I got over it – that’s all I could do.’
The condition means that Dorothy and Savannah, who are both 4ft 2in and wheelchair-bound, suffer broken bones and fractures due to their bodies not producing enough collagen.
Sharing the same difficulties, and living in a world ‘that wasn’t built for them’, means the mum and daughter, from Rhode Island, USA, are extremely close. In fact, they had barely been apart until Savannah went away to college in Pennsylvania last summer.
‘That was one of the most difficult times of my life,’ reveals Dorothy. ‘I didn’t sleep for a week before she left.
‘I like having somebody around who knows what I’m going through because I don’t need to explain things to her. I don’t need to say I am in pain – she just knows that I am having a bad day.
‘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.’
Savannah is equally determined that her disability won’t hold her back. ‘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.’
Part of that lesson was from Dorothy being deliberately hard on Savannah while she was growing up. ‘I knew she was in pain but I knew she could do anything she wanted,’ explains Dorothy. ‘Able-bodied people do difficult things all the time, they climb Mount Everest – maybe our Mount Everest is getting a plate off the bottom shelf of the upper cabinet in the kitchen.’