A mum has opened up about the ignorant comments she receives concerning her disabled daughter.
Emma Honća’s little girl, Mya Frances Honća, was born with osteogenesis imperfecta, a rare disorder characterised by extreme fragility of the bones.
Five-year-old Mya, who has broken so many bones in her life that her family has lost count, has had to undergo multiple surgeries and is often confined to a wheelchair.
Emma, 42, shares Mya’s journey on Facebook to raise awareness of her daughter’s condition and advocate for children with disabilities. While Mya has many supporters, Emma has received rude, cruel, and ignorant comments.
“I have been asked why I had her and why would I keep a baby with brittle bone disease,” Emma, a clinical nurse specialist from East Yorkshire, UK, told Need To Know.
“I have also been told she looks scary as the whites of her eyes are darker.
“This is a dominant symptom of osteogenesis imperfecta.
“We have even been criticised for sharing videos of Mya having fun and told she doesn’t have anything wrong with her.
“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.
“As a family, we share the narrative – the good, bad, ugly, and sometimes, funny, too.
“Our lives are hard and complex, but we try to keep things fluffy and light for Mya. We are a fun-loving family and we laugh loads.
“Mya has every right to find joy in life, and it makes me sad that some people want to impact negatively on that with criticism or nasty words.”
Doctors diagnosed Mya’s condition in the womb, and she’s been receiving treatment since the day she was born.
“Our life as a family is different as we always have to consider risks and have a contingency plan in case something happens,” Emma said.
“We have had to cancel holidays and family celebrations, but we have always tried to make things fun.
“Mya’s osteogenesis imperfecta prevents her from participating in the same things as other children her own age.
“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.
“In the last year, she has had four surgeries on her legs and elbows. This has impacted her schooling and she has had lots of recovery time.
“She had to have metal rods inserted into her elbows and legs to strengthen and support the bone and reduce fracturing. These are hard surgeries and the recovery is painful and long.”
Mya was unable to walk for several months following her operations and took her first steps again in March when Emma and her husband Louis took her to Disneyland Paris in March – a touching moment that was caught on camera.
Despite all the challenges she’s faced, Mya is happy and thriving.
“Mya’s osteogenesis imperfecta doesn’t stop her cheeky personality,” Emma said.
“She is a happy little girl.
“She 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.
“Even when she has to go in her wheelchair due to lethargy, she will still smile and sing a song or become excited about something. I am constantly in awe of her.
Emma added: “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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