‘Dance-obsessed’ toddler with rare bone disorder aces ballet class in wheelchair
This dance-loving toddler dreams of being a ballerina despite having extremely fragile bones – and has now started taking classes in her wheelchair.
Three-year-old Milam Kiser had begged her mum to let her attend ballet classes after becoming obsessed with dancing videos on YouTube.
When mum Amanda Staggs finally gave in, the delighted toddler didn’t let her wheelchair hold her back and fully immerses herself in lessons.
In a sweet video, taken by Amanda, Milam can be seen expertly pointing her toes and pirouetting in her wheelchair in line with the other little girls.
Milam and her older brother, six-year-old Noah Kiser, were born with osteogenesis imperfecta type 3 which makes their bones extremely brittle and means they use wheelchairs or ‘butt shuffle’ to get around.
In her short life Milam has suffered more than 60 fractures which have required casts or splints, but the tot still dreams of becoming a ballerina.
According to Amanda, 31, Milam loves to dance and regularly tells husband Jason Staggs that living with her is like ‘living in a musical’.
Amanda from Shelbiana in Kentucky, USA, said: “The child is a diva, she loves to dance and absolutely adores music.
“I tell my husband all the time that it’s like we live in a musical. Milam just randomly bursts out in song and dance.
“Milam asked me to go to ballet classes because she watches the other girls on YouTube doing it and wants to be like them.
“She said she wanted to be a ballerina so I called the instructors, explained about her being in a wheelchair and they were all on board.
“She absolutely loved it, some of the children were a bit older than her but she really enjoyed herself.
“Usually Milam gets really nervous around the other kids at first and there may be a few tears, but she really got stuck in.
“They let me stay with her though which they didn’t do with the other parents so I think that reassured her.
“It was amazing to see her come out of her shell and get involved in what the other kids were doing.”
When Milam’s older brother Noah was born, Amanda claims doctors told her to take him home to die, but both children have proved that prognosis wrong.
Every 12 weeks Milam and Noah travel five and a half hours for their care at Monroe Carell Junior Children’s Hospital at Vanderbilt in Nashville, Tennessee.
They have bisphosphonate infusions to help strengthen their bones and have both had Fassier-Duval surgery, which means they have telescopic rods in their spines that grow with them.
Amanda said: “I knew about osteogenesis imperfecta when I was pregnant with Noah. They told me to take him home to die because he wouldn’t survive. How wrong they were.
“The change is caused by a gene mutation which affects bone formation and structure and can cause dwarfism.
“Both Noah and Milam are affected, they are tiny.
“People always ask me if they’re twins even though there are three years between them.
“Most of the time Milam gets around in her wheelchair or just butt shuffles. She can’t walk and has only taken a few steps with a frame.”
Milam has suffered another fall since the initial class, but Amanda hopes taking more ballet classes will help Milam gain confidence and get back the delighted smile she had.
Amanda said: “Milam enjoys playing with the other kids but they always have to be very careful with her.
“She was so happy when she’d finished the class but she’s really nervous to go back now.
“She’s had a couple of fractures and a really bad fall since then and I think it’s knocked her confidence. She’s extremely scared of getting out and doing things again.
“She will get fractures very often. Since she was born she’s had around 60 which have either required casting or splints.
“We’ve been going out in Jason’s dad’s boat this summer on the lake which she enjoys.”
FACT BOX: WHAT IS OSTEOGENESIS IMPERFECTA TYPE 3 (Type III OI)?
Osteogenesis Imperfecta Type 3 is the most severe form of the genetic disorder
One in 15,000 people are born with the condition.
Characteristics can include bone deformity, pain, larger head than average, brittle teeth, fatigue, vision problems, easy bruising and short stature
Sufferers can have mobility and respiratory issues
People with Type III OI are born with fractures
People with Type III OI can have anything from several dozen to several hundred fractures in a lifetime
Treatment includes casting, splints, bracing, physiotherapy, medication and surgery
Info from Brittle Bone Society – www.brittlebone.org
Do you, or someone you know, have a similar story to tell? Get in touch today to earn £££ and raise awareness.