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'I'm proud of my dwarf teenagers'

Proud mum Christy Jordan loves watching her son and daughter’s daring cheerleading performances as they spin and tumble through the air. But for sports mad Bridgette, 18, and Brad, 16, the spectacular shows require special bravery.

The duo are just one of three known sets of siblings worldwide to suffer from a rare type of dwarfism that has left them with health problems including delicate bones and joints. But 2ft 4 Bridgitte, known as Bri, and 3ft 4 Brad don’t let it stop them living a normal life.

“Our family taught us to never say ‘can’t,’” says Bri. “We do everything our friends do, even joining the cheerleading team.”

Bri was diagnosed with Majewski Osteodysplastic Primordial Dwarfism Type II at 18 months old, which causes sufferers to develop to tiny proportions. There are fewer than 100 primordial dwarves in the world and no one knows what causes the condition.

Despite having normal-sized parents and an older sister, Brandi, 20, Bri weighs a mere 1st 3lbs and Brad weighs just 2st 6lbs.
Doctors realised Bri was different before she was born when a routine scan showed she wasn’t growing normally. She was born seven weeks premature, weighing just 1lb 12oz.

Christy, 42, a nurse, says: “They thought Bri was being starved of oxygen, so she was delivered early. I was terrified she was going to die.”

Bri was kept in a premature baby unit for three months, but it became clear there was something wrong when she didn’t grow as expected. When she was six months old, she had to have a tracheotomy because her windpipe was so small – she still breathes and speaks through a tube now.

“Doctors tried to bulk her up with food, but it didn’t make any difference and her stomach couldn’t handle it. They had no idea what was wrong with her,” says Christy.

When doctors diagnosed primordial dwarfism, Christy and husband Scott, 44, struggled to find out more about the rare disorder. Christy says: “It was a relief to finally know what was wrong, but there was no internet back then, so it was hard to find information. The doctors didn’t know much about the condition or Bri’s life expectancy.

“We also had to be creative – Bri had to wear tiny dolls’ clothes and, until she had surgery on her tracheotomy at five, she couldn’t speak and had to use sign language.”

Christy was already pregnant with Brad when Bri was diagnosed, and she had to wait to see if he’d be born with the condition too. Doctors knew there was a chance Brad could have it – as it’s genetic – but there were no tests they could do before he was born.

“Brad wasn’t premature, but he still only weighed 3lbs 6oz,” recalls Christy. “I was heartbroken that he had it too, as I knew it was going to be so hard for him – no mum wants her children to struggle.

“I knew I’d have my work cut out caring for two children with the condition, but I have to admit I was pleased for Bri because it meant she wouldn’t be on her own any more.”

It wasn’t until Bri and Brad started school that they realised they were smaller than everybody else. Christy says: “It was hard for them to accept and both came up against limitations that left them feeling frustrated and angry. Brad wanted to join the basketball team, but it was too dangerous. He was gutted and it was hard seeing him so upset. Bri now wants a job, but she’s too small to serve in a shop or waitress, so she babysits her niece instead.”

Bri’s niece, Baili, is only two but is already as tall as her auntie. “Even though Bri is small, Baili knows she has to respect her,” says Christy. “We call Bri ‘the pioneer’ because she’s led the way for Brad. It’s been trial and error and she’s come  unstuck a couple of times. I’ve lost count of the number of times she’s been knocked flying by strangers or toppled off kitchen worktops.”

Brad and Bri have also had to learn to cope with cruel comments. Christy says: “I was once asked, in front of Bri and Brad, if they were elves. And a teacher stopped them from performing in a school show because she said she didn’t want it to become a ‘freak show.’”

The family home in Illinois, USA, is specially adapted to their needs, with low-level doorknobs and light switches, as well as a miniature bathroom and small fridge. Brad wears toddler-sized clothes, but Bri is so small, she has outfits specially made.

Sadly, their condition causes a variety of health problems and the siblings make regular trips to their doctor. Primordial dwarves have delicate bones and joints, and are at greater risk of brain aneurysms and strokes. Both Bri and Brad wear small dentures since their teeth fell out. Bri also suffers from scoliosis – curvature of the spine – as well having as hip and
knee abnormalities.

But in spite of these difficulties, both attend a normal school with the help of an aide, who helps them get around safely, and they achieve good marks in their studies.

The family’s main challenge now is to find ways that Bri and Brad can live independent, adult lives like their friends.
“We’d like to help them go to college, find jobs and even learn to drive,” says Christy. “My greatest fear is that they’ll end up sitting at home all day, away from society. But they both have high hopes for the future. We will support and help them,
and try to make things happen.”

Brad wants to go to college and become a Hollywood actor. “I’d love to perform in films and on stage,” he says. Meanwhile,
Bri has dreams of becoming a model.

Primordial dwarves are so rare that doctors can’t accurately predict their life expectancy. The oldest living primordial dwarf has reached her 40s and the Jordans hope Bri and Brad will live longer. But despite everything, Christy says she has never wished for them to be any different.
 
“Bri and Brad have such a unique outlook on life and I’m really proud of them,” she smiles. “They are so positive and courageous – if we could all be half as inspirational, it’d be a better world.” 
By Alex Lloyd