Father raises awareness for rare disorder

Finds healing after loss biking across the United States

Allyson Dix
Government Community News

He has been through the Rockies, Yellowstone National Park, across the Gulf of Mexico, through the plains of Kansas, from sea to sea and now, Glasgow, Kentucky all to raise awareness for Epidermolysis Bullosa.

Glasgow was home to Robb Freed for a short time as he passed through while bicycling across the United States and back for the second time. He stayed overnight on Nov. 22 at the Main St. Bed & Breakfast.

In his second year of bicycling over 8,000 miles, Freed, who resides in upstate New York, is using his journey to raise awareness for a rare genetic connective tissue disorder called Epidermolysis Bullosa (EB).

A few weeks after his son was born in August 2007, they learned he had EB and that it was the most lethal and rare type.

His son, Drake E Freed, was given one year to live and at 13 months old, passed away from complications due to EB.

He told the Barren County Progress that out of all the people he has met in his two years traveling the country he has met only a couple of people that knew what EB is.

“EB is such a rare disorder and it has no cure,” Freed said, “It is such a horrific disorder and if you think about your skin having layers and missing crucial collagens and proteins that hold your skin together, that is what EB is like.”

The nonprofit website debra.org is an informative source for learning more about EB. According to their website, EB affects 1 out of every 20,000 children, or around 200 per year.

The often debilitating and always painful disorder has many genetic and symptomatic variations, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma, including internal organs and bodily systems.

“Some of these kids cannot even brush their teeth or be able to be given hugs because it can cause blisters to form on their skin,” Freed said.

Freed said it was so rare that the hospital where Drake E was born had not seen an incident of EB since 1965.

After losing his son, Robb said he found himself spiraling into a dark place for several years. That place was a mix of grief, anger, hatred, and many other hard emotions that took over his life and affected his relationships with his friends and family.

Somewhere along the way, Freed found a new outlet that allowed him to start changing his perspective on life. And that outlet was bicycling, which would turn in to what Freed describes as an addiction. Everywhere he went he would ride his bike.

“I could finally cope and deal and understand that I’m not ever going to be able to get over Drake E passing away, but maybe I can figure out ways to put one foot it front of another,” Freed said.

Freed has another son, Chase, 15, who does not have EB, but he said that if one child has EB, there is a 50% chance their siblings could have the disorder and the same variation.

A friend suggested to him that since he was always riding his bike, and always talking about Drake E and EB, that he ride across the country to raise awareness.

“That is really how the process started and how I gained my calling about four years ago,” he said.

His number one purpose for the awareness ride is to raise awareness for EB in hopes that it will help to produce a quicker cure and better treatments.

However, his journey his much more than that and has many pieces to the puzzle.

“I want to come back a better person,” Freed said, “Some of it is for me to cope and understand people, and meeting all different kinds of people across this country has been the best way to do that.”

Another piece of the puzzle is that Freed knows all too well what the families of today are experiencing with EB diagnoses.

“When families who are currently dealing with EB see me doing this, it gives them a little bit of hope for a better day,” Freed said, “And hope is the currency these families deal in; hope is everything.”

“But for them to see it gives them a little something to say ‘we did something today, we are better off today than we were yesterday, which is all they want.”

Freed does raise money for the debra of America, which is a nonprofit organization that deals in the EB arena. Proceeds made to debra of America are used for many EB-related aspects, including research for a cure, provides programs, nursing consulting, conferences, and advocates for better treatments to provide a quality of life for those currently living with EB.

However, he also has a private sponsorship account for those who feel led to donate to. These donations are from people and companies who ask him personally how can they help him during his journey. These donations are used towards necessities such as food and bike repairs.

Speaking of bike repairs, Freed was held up in Nashville, Tennessee this past weekend for a major bike repair. To donate directly to him, his contact number is 518-526-4886 but prefers texting when possible because he has to wait for a safe spot to stop to check his phone and texts are easier to initiate a reply.

His website, www.thebigrideforEB.com, is packed with stories, some happy, some sad, and continuously updated on where he currently is and interesting information about where he has been. Also following his Facebook page, The Big Ride for EB, will keep you interested in where he’s been and where he’s headed next.

Robb Freed’s inspiration is heard in his voice and in his spirit. Life has given him his journey and he is creating the path to raise EB awareness, to embark on personal healing, and to give hope to many EB families who have very little.

When asked what he hoped Drake E would believe about his dad today, Freed said, “I just hope he’d be thinking ‘that’s my dad trying to do better, trying to make other people better, and providing hope for other EB families.’”

“I hope he would see that and see the sacrifices towards my friends and family and say, ‘My dad’s doing a good thing.’”