A newlywed ageing at twice the normal rate is refusing to let her condition slow her down.
At 30-years-old, Challi Muguira is one of the oldest surviving people with progeria in the world.
Progeria is a rare genetic disorder characterised by premature aging, growth delay, short stature, small face and hair loss.
Challi, from Baton Rouge, Louisiana, has a rare form, was told that it would be a ‘miracle’ if she lived past her teens.
But she has defied expectations to celebrate her 30th birthday, and after finding happiness with her now husband Tony, who she met on a dating site, and who is legally blind, Challi has vowed to live every day to the full.
Challi Mguura, 30, has a condition called progeria that makes her look decades older than she is
Challi first showed signs of the condition at two-years-old when she fell off of her bicycle and her mother realised her fingers had started to club
Her form of progeria is different from the classic form and she does not age at quite the same rate, but is still mistaken for someone who is decades older.
Challi told Barcroft TV: ‘I like being different. It’s affected my life in more of a positive way and I want to help people, especially kids like me. ‘
Progeria is a rare aging disorder and children that have it normally pass away by the time they are 10 to 15.
‘I have a very moderate case but I was told at a very early age that it would be a miracle if I would live to be 30 years old, so I am obviously doing well, compared to what I thought… I am not aging as fast.
After marrying her husband Tony in November 2017, Challi has vowed to live her life to the fullest
It took 14 years before Challi was given the diagnosis of progeria, which she has a moderate form of
WHAT IS PROGERIA?
Progeria, also known as Hutchinson-Gilford syndrome, is an extremely rare, progressive genetic disorder that causes children to age rapidly, beginning in their first two years of life.
The name derives from the Greek word meaning ‘prematurely old’.
Children with progeria generally appear normal at birth. During the first year, signs and symptoms, such as slow growth and hair loss, begin to appear.
Heart problems or strokes are the eventual cause of death in most children with progeria.
The average life expectancy for a child with progeria is about 13 years, but some with the disease die younger and some live 20 years or longer.
There’s no cure for progeria, but ongoing research shows some promise for treatment.
Source: Mayo Clinic
‘I do have the features of someone who has progeria – I have very prominent eyes, very thin nose, very thin hair and you can tell by looking at me that I don’t look 30.’
Challi first showed signs of the condition at just two-years-old when she fell off of her bicycle and her mother realised her fingers had started to club.
She was taken to the the doctors, but it would be another 14 years before Challi was given the diagnosis of progeria.
She said: ‘The diagnosis itself [involved] lots of doctors’ offices. Eventually one doctor sent us to a children’s hospital and from there I got a very good doctor.
‘He had one of his classes do a study on just me and the class were actually the ones who diagnosed me. There are a lot of things that you learn about yourself during the process.
‘At 16 years old you don’t want to hear that you are aging faster but I learned a lot. There are things that you kind of have to accept and I had amazing doctors along the way.’
The newlywed found it difficult to accept her appearance at first, but later used it to her advantage to get served alcohol when she was 18 – below the legal age limit.
Progeria is a rare aging disorder and children that have it normally pass away by the time they are 10 to 15
She used her condition to her advantage to get served alcohol when she was 18-years-old
Challi says she likes being ‘different’ and her condition has made her want to help others
Challi said: ‘It’s hard when you’re 15-years-old and people think you’re 30, that was rough. Even when I was younger people would think I was 21, I was only 18, I could drink at an early age, it was fun – it came in handy.’
However, she also found herself being targeted by bullies at school for her appearance.
She said: ‘I got teased so bad in middle school. High school wasn’t as bad, I had a very wide group of friends.
‘Actually a lot of those kids who teased me later on in life came back and told me that they were sorry as adults.
She admitted that other children had teased her when she was in school but they later apologised as adults
She met her husband Tony, who is legally blind, on a dating website and they clicked straight away
The happy couple say they help each other through their respective health problems
‘That did mean a lot, there is one in particular I will never forget, who told me that he was sorry and that really meant the world to me.’
After Challi left school, she finally found someone she could truly connect with romantically, her now-husband Tony.
She explained: ‘Tony and I met on a dating site. I liked talking to him, I enjoyed it and I like that fact that when you talk to somebody like that, they can’t judge you based on what you really look like. They are only judging the person they get to know.
‘I think I loved him the moment I met him. I knew from way in the beginning that I wanted a life with him.’
Children with progeria generally appear normal at birth. During the first year, signs and symptoms, such as slow growth and hair loss, begin to appear
The average life expectancy for a child with progeria is about 13 years, but some with the disease die younger and some live 20 years or longer
Tony, who is legally blind, bonded with Challi immediately and neither of them have looked back since.
Tony said: ‘We support each other. We bring out the best in each other. We try, a lot of the time, to goof off and take each other’s minds off of it. We sit down and talk and remind each other that it’s not that bad.
‘Being with Challi changed my perspective on a lot of things. She is just one in a million!’
Eighteen months into their relationship, Challi and Tony tied the knot in a ceremony attended by their closest friends and family.
Challi said: ‘My wedding was perfect. There was everything I could dream of. ‘Walking down the aisle, and seeing Tony, I was so nervous, so nervous, but as soon as I got to him I was like, this is it – my whole life is about to change.
Tony said being with Challi has changed his ‘perspective on a lot of things’
Challi wants other people with progeria to try and see the positive in their condition
‘It was the happiest day of my life.’
Despite the lack of certainty about her life expectancy, Challi is determined to live each day to the fullest and refuses to allow her condition to hold her back.
She said: ‘As far as how long I’m going to live, no one knows. There is going to be a point where my life will be shortened and I know that.
‘It has taken me a long time to come to terms with it and it’s actually easier to live with it now that I am happy and I have somebody who loves me.
‘If I could tell anybody one thing about progeria, it would be that it’s not always negative. If you can see the positive in it, you’ll have a great life.’