An 11-year-old boy is ‘one-in-a-million’ because he is one of just 30 people across the world with a rare form of dwarfism.
Levi Krystosek, from Ocean Springs, Mississippi, was expected to die within days of being born – but he overcame the odds.
However, his parents remain on tenterhooks as a playful tussle with his friends could be ‘catastrophic’ for the 3ft 1in schoolboy.
Doctors diagnosed ‘Little Levi’ with Jansen’s Metaphyseal Chondrodysplasia – which affects the growth of bones and causes considerable pain.
Levi Krystosek, from Ocean Springs, Mississippi, was expected to die within days of being born – but he overcame the odds
Levi, who flies across the country regularly to see different specialists, has a ‘high tolerance’ for pain and rarely complains (pictured as a baby)
Doctors diagnosed ‘Little Levi’ with Jansen’s Metaphyseal Chondrodysplasia – which affects the growth of bones and causes considerable pain
Levi, who flies across the country regularly to see different specialists, has a ‘high tolerance’ for pain and rarely complains.
Because of his condition Levi also cannot play any contact sports – even a friendly tussle with playmates could be life threatening.
Levi said: ‘How it makes me different from the other kids at school is I can’t play contact sports.’
His mother, Dona, added: ‘He is not allowed to jump. He has to be very careful. A simple headlock could be catastrophic for him.
Determined their son would survive, she and Joseph Krystosek had to feed Levi every two hours just to try and build up his strength.
When he started school, Levi, who can only see out of one eye, failed Kindergarten twice and was put into a special needs class.
However, all he needed was to sit near the front of the class and have his worksheets blown up so he could read them.
Little Levi, as he is known by friends and family, was then put into general education classes in the middle of 3rd grade (eight years old).
Despite dropping ‘through the cracks’, he caught up on three school years in one year – and is now in 5th grade and has started playing the piano too.
Most cases are evident at birth with sufferers having an unusually-shaped jaw, wide eyes and receding chin (pictured as a baby)
Determined their son would survive, Dona (left) and Joseph Krystosek had to feed Levi every two hours just to try and build up his strength. Now he is thriving (right)
Mrs Krystosek, 47, told Barcroft TV: ‘When he was younger he’d say I can’t wait to get another birthday so I can get taller.
‘I had to explain to him just because you get another birthday it means you are going to get older but it doesn’t mean you are going to get taller.
Orthopedic surgeon Dr William MacKenzie, who has known the Krystosek family for over eight years, said. ‘JMC is an extremely rare form of skeletal dysplasia.
‘It happens in about one-in-a-million live births, so that makes Levi pretty special.
‘It is caused by an abnormal receptor in the bone which interferes the way the bone grows and develops.’
Because the body doesn’t process calcium as it should, the bones get bendy and crooked – ‘wonky bones’ as the family calls them.
It took a year for Levi to receive the diagnosis of JMC; initially his parents were relieved to learn he had a form of dwarfism unaware of the future complications.
Mrs Krystosek said: ‘The doctor came in to the hospital room and said “I need you to sit down”. And he sat me down and he told me that Levi had Jansen’s.
‘I was relived to have knowledge of what he had.
His parents remain on tenterhooks as a playful tussle with his friends could be ‘catastrophic’ for the 3ft 1in schoolboy
Orthopedic surgeon Dr William MacKenzie (pictured), who has known the Krystosek family for over eight years, said. ‘JMC is an extremely rare form of skeletal dysplasia’
At the moment Levi is 3ft 1in tall – the average height for an 11-year-old boy is approximately 4ft 7in (pictured with Dona)
‘But then it made me sad because the more that the doctor explained what was going to happen, it was hard. It sounded very painful.
‘I had a lot of questions. When we found out that Levi had Jansen’s I wanted to know what caused it? Was there a cure? And there is not a cure for Jansen’s. Were there other cases? Were there other children that lived nearby?
‘I just knew at that moment that I was going to do everything I could for him to get the best quality of life for him.’
It happens in about one-in-a-million live births, so that makes Levi pretty special
Orthopedic surgeon Dr William MacKenzie
Since then the family have had to get used to making many visits to hospitals across the country.
Levi said: ‘I actually have to go to a couple of doctors for different things like to my eye doctor in Birmingham because I can only see out of this eye and then I go to Chicago and the children’s hospital there.’
The family have had to fly back and forth to various specialists across the country all of Levi’s life.
Thanks to a charity called Miracle Flights they’ve been able to afford the multiple trips.
On his latest visit to the Nemours Children’s Hospital in Wilmington, Delaware, Levi was fitted with a back brace to help to try and straighten out his spine.
If the brace is successful it could help add crucial inches to Levi’s height.
At the moment Levi is 3ft 1in tall – the average height for an 11-year-old boy is approximately 4ft 7in.
While Levi’s small stature is the most obvious physical sign of JMC, the condition has also had an impact on his internal organs.
Because the body doesn’t process calcium as it should, the bones get bendy and crooked – ‘wonky bones’ as the family calls them
Because there is such a low number of genetically confirmed cases of JMC there is limited information on it (pictured with her father Joseph)
Mrs Krystosek and her family are actively involved with the Jansen’s Foundation, which aims to raise awareness and push for more research
And in spite of his positive nature, Levi is constantly in pain.
Mrs Krystosek said: ‘We don’t give him pain medicine because he’s stage 1 kidney disease.
‘He has a high tolerance for pain so when he complains I know he’s really hurting if he’s out walking around or playing somewhere he’ll just sit down and rest. When he says he’s in pain that’s when I call the doctor.’
‘Levi uses his wheelchair for long distances. He uses it mostly at school. We use a special needs stroller right now when we are out in public. He just received a power wheelchair.’
Because there is such a low number of genetically confirmed cases of JMC there is limited information on it.
Mrs Krystosek and her family are actively involved with the Jansen’s Foundation, which not only bring together those who also have the condition but also to raise awareness and push for more research.
She said: ‘We’ve always been honest with him about everything. He understands the condition and that doctors are trying to find a cure but it might not help him. It’s more a bout finding a cure for the pain levels than the height.’
‘My hopes for Levi in the future are that he grows up and he gets married. I want him to be a normal, happy, healthy kid. I want him to do as much as he can do.’
Because of his condition Levi also cannot play any contact sports – even a friendly tussle with playmates could be life threatening
While Levi’s small stature is the most obvious physical sign of JMC, the condition has also had an impact on his internal organs
Thanks to a charity called Miracle Flights they’ve been able to afford the multiple trips (pictured with the charity in a cockpit)