Parents’ heartbreak as daughter, 2, suffers rare disease

The parents of a toddler diagnosed with an extremely rare and incurable disease, have revealed their heartbreak at learning this Christmas might be their daughter’s last.

Two-year-old Kyra McKinlay, from Perth, was diagnosed with a genetic disorder which destroys the protective covering of the nervous system, just two weeks ago. 

Her parents, Barry and Tammy were told this Christmas would likely be little Kyra’s last.

 

Two-year-old Kyra McKinlay was diagnosed with a rare and incurable genetic disorder just two weeks ago, as her parents were told this Christmas may be her last

Little Kyra was diagnosed with Metachromatic Leukodystrophy (MLD), and her father said the disease took complete control of his daughter in October

Little Kyra was diagnosed with Metachromatic Leukodystrophy (MLD), and her father said the disease took complete control of his daughter in October

Kyra’s father Barry McKinlay said it was devastating watching his daughter’s health deteriorate so rapidly.

‘She can no longer crawl or sit unassisted, has trouble feeding and suffers painful leg spasms,’ he told Seven News.

‘It’s devastating, it really is.’

Mr McKinlay said the disease, called Metachromatic Leukodystrophy (MLD), took complete control of his daughter in October.

'She can no longer crawl or sit unassisted, has trouble feeding and suffers painful leg spasms,' Kyra's father Barry told Seven News

‘She can no longer crawl or sit unassisted, has trouble feeding and suffers painful leg spasms,’ Kyra’s father Barry told Seven News

Kyra's father Barry McKinlay said it was devastating watching his daughter's health deteriorate so rapidly

Kyra’s father Barry McKinlay said it was devastating watching his daughter’s health deteriorate so rapidly

This was when she began struggling to crawl and lost the ability to sit unassisted. 

He said it took nine months for doctors to diagnose little Kyra’s condition.  

Mother Tammy was 34 weeks pregnant and worried her unborn son might inherit the condition as well. 

WHAT IS MLD? 

MLD is a defective gene carried by about one person in every 100 

If both parents carry the condition, there is a 25 percent chance their child will inherit it 

There is no cure as yet for MLD  

 

While she feared the worst, she said early diagnosis and treatment could mean the difference between life and death. 

She called for screenings to be made available for all newborns so the symptoms of MLD were caught sooner.

In the meantime, Tammy said she wanted to give her daughter the most incredible memories before the condition stole her eyesight. 

Tammy said she wanted to take her daughter, a Minnie Mouse fan, to a theme park in Queensland so she could meet the character face-to-face before it was too late. 

Her parents created a GoFundMe page to help raise money for Kyra’s trip to Queensland, and to give her the best possible care before she succumbed to the incurable disease. 

Read more at DailyMail.co.uk