Three-year-old girl lives with rare condition which means she can’t stop smiling
Madeline Hnidey lives with Angelman Syndrome – a genetic condition that affects the nervous system and causes severe physical and learning difficulties.
Part of the condition is that she laughs all the time, is easily excitable and can’t stop smiling.
The three-year-old, from Texas, US, was diagnosed with the rare Angelman Syndrome at ten months old.
Mum, Kira, 38, said: ‘She’s always smiling, the only time she cries is when she’s in pain but even then it alternates between crying and smiles.
‘It makes it more bearable. She has this innocence that kids usually grow out of.
‘She’s so happy and loving and wants to pull you close.
‘The condition was called happy puppet syndrome before it was called Angelman Syndrome
‘I don’t know what goes on in her head but the way her expressions are say that she’s happy.
‘When we’re in hospital and she’s having needles and bloods taken, the nurses can’t get enough of her because she’s so smiley and happy and isn’t that what every one wants to be?’
Madeline was diagnosed after she suffered her first seizure and mum Kira decided to give up her job in the air force to take care of her full time.
Kira said: ‘I was in shock when she was first diagnosed and I just wasn’t prepared.
‘The first thing I wanted to know was whether she was going to die but luckily it doesn’t really affect life span but they can be more susceptible to pneumonia and have seizure accidents.
‘She needs 24 hour care. One of the hardest things is the lack of sleep.
‘She usually sleeps for two to three hours per night and we can’t live like that.’
Madeline also struggles to communicate, is tube fed and suffers from one seizure every minute where she loses control of her muscles.
Kira said: ‘Maddie can say “mum” so far.
‘The seizures are difficult to control because the quantity is dependant on the day but they have been extra bad lately.
‘It’s loss of muscle and her eyes roll back for a few seconds but we’re up to one a minute now.
‘She’s taking several medications so we can try to control them.
‘They are difficult to quantify at the minute but they are very bad, we have times where they are barely noticeable and some days that are just bad.’
Maddie, who lives with her mum and sisters, Emberlynn, 12, and Avalon, 10, goes to physical therapy, occupational therapy and speech therapy and Kira said she’s getting stronger by the day.
Kira said: ‘Her sisters absolutely love her, they think she’s special.
‘It must be hard because she needs a lot of care and attention from me.
‘Maddie absolutely loves them and she gets so excited when she sees them.
‘It’s very difficult but when you love your child you’d do anything for them.
‘I hope people accept her for who she is as she gets older.’
Do you have a story to share?
Get in touch at Metrolifestyleteam@metro.co.uk.