‘I have been asked why I had her and why would I keep a baby with brittle bone disease,’ said mum Emma Honća about her daughter, Mya Frances Honća, and the comments she gets all the time.
Mya, five, was born with osteogenesis imperfecta, a rare genetic condition present from birth. Its main feature is extremely fragile bones due to a defect where the protein responsible for bone structure is missing, reduced or of low quality, Great Ormond Street Hospital explains.
Her parents have lost count of how many bones she’s broken in her life and she’s had to undergo multiple surgeries because of her condition and must use a wheelchair.
Emma, 42, a clinical nurse specialist from East Yorkshire, shares her daughter’s journey on Facebook to raise awareness. But she also reveals the ignorant remarks from strangers aimed at Mya in person and online.
‘I have also been told she looks scary as the whites of her eyes are darker. This is a dominant symptom of osteogenesis imperfecta.
‘I don’t always respond as I feel a response shows they have impacted on me, which I don’t want. However, I do sometimes respond as it is not nice and I feel protective towards Mya.’
Doctors diagnosed Mya’s condition while Emma was still pregnant with her. Mya’s been receiving treatment since the day she was born.
Emma says her family’s lives are ‘hard and complex’ but they try to keep things ‘fluffy and light’ for Mya.
‘Mya has every right to find joy in life, and it makes me sad that some people want to negatively impact that with criticism or nasty words.’
Emma and her husband always have contingency plans in case something happens with Mya’s condition. In the past they’ve cancelled holidays and family celebrations. They are also parents to Josh, 16, eight-year-old Marcus, and 18-month-old Macie.
Even though osteogenesis imperfecta prevents Mya from doing the same activities as other children her age, her parents are both focused on ensuring she has as much fun as she can.
‘She can’t take part in physical education or bounce on a bouncy castle at a children’s party. And she can’t play sports. She has to be supervised at all times in case she hurts herself.’
Mya has had to have surgeries as a result of her condition. ‘She had to have metal rods inserted into her elbows and legs to strengthen and support the bone and reduce fracturing,’ Emma shares. ‘These are hard surgeries and the recovery is painful and long.’
After being unable to walk for several months following her operations, Mya took her first steps again in March when Emma and her husband Louis took her to Disneyland Paris.
‘Mya’s osteogenesis imperfecta doesn’t stop her cheeky personality,’ Emma says. ‘She is a happy little girl.’
‘Mya does tire very easily and has afternoon naps to refresh her. Luckily she knows when she is tired and will ask to go to bed. She also struggles with speech due to hypermobility but continues to have speech and language input and this is helping.
‘She is the most beautiful and kind little girl and never complains about anything. She will hurt herself and say, “It’s alright mummy, I am okay.” That warms my heart as she is always so aware of others.’
Emma hopes to change perceptions by speaking out. ‘I wish people understood that we are not sorry. We had so many people saying “I’m sorry about Mya” or people who did not know how to react to her disability.
‘We are not sorry about Mya. She is the most amazing little girl and osteogenesis imperfecta is only a small part of her. We want people to see the beauty and kindness that is Mya, and see her wheelchair and disability as secondary.’
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