Grandmother walking 500 miles for grandson with rare disease

HIGH POINT, N.C. -- It seems like it was yesterday when Dani and Devin Murphy got the exciting news.

Their son Declan Murphy was born May 2016 and gave them the joy of being parents for the first time.

A few months after Declan was born, Dani and Devin noticed he had some developmental delays.

“We first noticed that something was wrong around 4 months when he wasn't lifting his head up consistently, but we didn't get a confirmation of the diagnosis until 14 months,” Dani said.

They found out Declan has a rare condition that affects the central nervous system called Pelizaeus-Merzbacher disease (PMD).

It took some time for the family to receive a diagnosis because the medical professionals they worked with had not seen cases of PMD.

PMD Foundation estimates there are between 300 and 1,000 cases in the United States.

When the Murphy family got more information about what it could mean for Declan, it was troubling.

“He might not be able to walk, he might not be able to talk and he could die at an early age depending on how severe,” Devin said.

The rarity of the condition is why the Murphy family says spreading awareness is so important.

“That is how cures are found, that’s how they’re started, that's how people get interested in a certain disease,” Dani said.

Dani and Devin didn’t have to look far to find one of Declan’s greatest advocates.

Darla Murphy, Declan’s grandmother, is training to travel the Camino de Santiago.

The well-known 500-mile journey has been on her bucket list for years.

“Right before we got the diagnosis, I really felt an impression from the Lord and said to me, 'Why don't you do this with purpose,'” she said.

Her fitness routine includes weightlifting, walking and hiking to be prepared to cover the distance carrying a 20-pound pack for a little more than a month.

Darla is known as an adventurous person, but says this will be the most meaningful of adventures.

The family is optimistic knowing that Declan appears to have a mild case of PMD and is making progress with a non-traditional therapy.

On Saturday, May 5, the Sportscenter Athletic Club in High Point, will have a family fun day to help support Declan and his family.