My baby girl was slightly stiff. Now she’s been given just years to live after a

A new mom has shared her heartbreak after a subtle symptom in her newborn ended up leading to a horrific diagnosis that has now left her baby with only 10 years to live.

Kaitlin Norton, 29, and Gerard Norton, 32, from Massapequa, New York, were enjoying the bliss of new parenthood after welcoming their daughter, Madeline, in December.

But the joy of being first-time parents was quickly turned into fear and devastation when their ‘completely normal’ newborn was diagnosed with an extremely rare neurodegenerative disorder six months after her birth.

There was only one warning sign that something was wrong, and it’s something that could be easily overlooked by many parents: the youngster was a little stiff.

‘She was holding her head up within a week. She wasn’t the type of newborn to just cuddle up in your arms. It was also difficult to dress her,’ Kaitlin shared exclusively with the Daily Mail.

‘We noticed that she always held her arms close to her chest and it was hard to pull them out. But she was completely normal other than the stiffness.’

Kaitlin explained that while it didn’t seem like a big deal at first, her ‘gut’ told her that something was wrong, so she brought Madeline in to her pediatrician.

Kaitlin Norton, 29, and Gerard Norton, 32, from Massapequa, New York, were enjoying the bliss of new parenthood after welcoming their daughter, Madeline, in December

But the joy of being first-time parents quickly turned into devastation when their newborn was diagnosed with an extremely rare neurodegenerative disorder six months after her birth

The doctor didn’t seem too concerned, but he recommended they go see a neurologist to be sure there was nothing to worry about. The neurologist conducted full genetic testing.

That is when the devastating news came in: Madeline had Pantothenate Kinase-Associated Neurodegeneration (PKAN), which is a rare genetic disorder that affects fewer than one in one million children.

It causes dystonia (involuntary muscle contractions), significant speech disturbances, dementia, visual impairment and seizures among other things.

They were told Madeline likely only had 10 to 15 years to live, and that while her early years may be normal, she will lose her motor functions, speech and ability to walk as she ages.

‘It is a genetic mutation that causes an iron build up in her brain over childhood,’ Kaitlin explained. 

‘Due to the iron in her brain, she’ll experience a regression in motor skills. She will have dystonia and eventually require the use of a wheelchair and feeding tube… 

‘We truly only thought she had hypertonia and that physical therapy would help. We were completely blindsided when we received the results.’

As expected, Kaitlin said they were ‘devastated’ over the fatal diagnosis.

There was only one warning sign that something was wrong, and it’s something that could be easily overlooked by many parents: the youngster was a little stiff

Madeline has Pantothenate Kinase-Associated Neurodegeneration (PKAN), which is a rare genetic disorder that affects fewer than one in one million children

They were told that Madeline likely only has 10 to 15 years to live, and that while her early years may be normal, she will lose her motor functions, speech and ability to walk as she ages

She called that day ‘a blur’. 

‘We couldn’t believe we received this diagnosis as we hadn’t heard about that disease before,’ she said.

‘We were devastated. Initially we were in shock. We slowly told our family and friends the news – it was world stopping. 

‘We spent the next two days as a family just processing the news, then the few weeks after lost in grief.’

While Madeline’s condition is not curable, Kaitlin explained there is a foundation currently raising money to fund gene therapy research to look for a cure.

They have now started a GoFundMe to help contribute to the foundation, where they have brought in over $43,000.

‘We are optimistic but also realistic. We are doing everything we can to find a cure for our daughter,’ Kaitlin concluded. 

‘Our goal is to spread awareness and raise funds for the gene therapy. We will do anything for our precious baby.’