Meet 7-year-old Ayeyi suffering from Osteogenesis Imperfecta but touching lives with her positivity
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Doctors advised her mother to abort her during her twenty-eighth week in the womb due to the rare condition but her mother kept the pregnancy till the very end.
Now aged 7, Ayeyi Yiadom Boakye who lives in Cape Coast with her family has bones that break easily, sometimes with just a wave of her hand. It is a rare genetic condition with no cure. Doctors call it osteogenesis imperfecta, which means “imperfectly formed bone.”
According to the Osteogenesis Imperfecta Foundation, the genetic disorder can cause bones to break from little to no apparent cause.
Speaking to TV3’s Portia Gabor, Ayeyi’s mother narrated how her daughter was diagnosed with the rare condition.
“The scan said the child I have has deformities with the limbs, and so the doctors advised we terminate the pregnancy. That was a very difficult thing for us to do considering our Christian background. Due to our Christian values, we couldn’t do such a thing.
September 2, 2011, Ayeyi was born. But before I went to see the baby, my mother told me one thing, If you see the baby, no matter how she looks like love her with all your heart. When I saw the baby, it wasn’t what any mother will expect from a first child”.
Ayeyi has endured treatment for fractures since birth; every breath or movement can cause her bones to break.
Despite all the pains a fracture brings to her, Ayeyi is an epitome of strength, courage, and hope.
In the video, she is seen seated whiles dancing and shaking her head, one of her hobbies she loves doing.
“My hair is super nice,…I will never ever ever cut my hair off. Because it’s so special to me. And then it can give me a lot of energy to dance, sing and also stand…”, she bubbly told Portia whiles crossing her legs.
She says she will not let her condition define her; she may not be able to walk but she has gradually learned to stand on her feet.
Her family is proud of her achievement, to them, she’s a blessing.
Ayeyi wants to meet the First Lady, Rebecca Akufo-Addo to raise awareness on her condition.
More about the disease
Osteogenesis imperfecta or brittle bone disease is caused by a defect in the gene that produces type 1 collagen, a protein essential in bone creation.
One in 20 000 babies worldwide are affected and cases range from mild to severe.
Some sufferers can have a loss of hearing, heart failure, and spinal cord problems.
Symptoms include bow legs and arms, loose joints, multiple broken bones, and respiratory problems.