Thousands of People Attended a Parade to Cheer Up a Terminally Ill 3-Year-Old Boy with a Disease Known as ‘Butterfly Skin’

The painful condition causes blistering, peeling skin that is as fragile as a butterfly’s wings

Thousands of people showed up to bring joy to a 3-year-old Missouri boy with a rare and incurable disease.

Tucker Langford of Kansas City city suffers from recessive dystrophic epidermolysis bullosa (RDEB), a painful recessive condition which causes peeling, blistering skin, per local news outlets KSHB, KMBC and the Kansas City Star. The condition is also known as “butterfly skin” because it makes the skin as fragile as a butterfly’s wings.

Tucker was recently released from Children’s Mercy Hospital in order to receive end-of-life hospice care at home, and his family decided to organize a parade to go by their house for Tucker to enjoy on Saturday, Oct. 11.

That’s when the local fire department stepped in to spread the word.

“To all of our fellow first responders, motorcycle riders, Jeepers, car showers and hot roders! Heads up! We need your help!!” began a Facebook announcement from Kansas City Fire Department (KCFD) Station 10.

They added that “Tucker’s favorite things are trucks, Jeeps, motorcycles, hot rods and emergency apparatus.”

“The family would LOVE for a showing of public safety to support Tucker and help bring joy to this little guy,” they continued, adding, “Help us out! Let’s give Tucker the final honor he deserves!”

In an update to the post, Station 10 shared that the location of the parade had been moved to a larger venue “due to the overwhelming support and outpouring of interest to participate.”

Tucker’s mom, Chandler, said she was overwhelmed when she saw the number of people who showed up for her son.

“When we were pulling [up to the parade], I was crying because seeing everyone supporting Tucker and our family means a lot to us,” she told local news outlet KHSB.

Tucker’s grandfather, Rick Langford, told the outlet that his grandson is known as “Tough Tucker” in their family because of how he has faced all the challenges thrown his way.

“He’s had that name since the very beginning,” his mom added. “Because the doctors told him that he wouldn’t make it to 1, and here he is 3. He’ll be 4 Christmas Eve. I bet you he will show everyone how tough he is.”

In a GoFundMe established by the family to help cover Tucker’s needs, they shared that Tucker was “missing skin on his feet, hands, lips and chest” at birth, and said he was diagnosed with RDEB shortly after.

They continued, “Despite his challenges, Tucker consistently brings joy and laughter to those around him. He loves talking about his trucks, playing with his baby brother, and spending time with his family.”

“Tucker is one of the best storytellers you will ever meet,” they added.

As of Thursday, Oct. 16, the GoFundMe has raised $40,975 towards an ultimate goal of $45,000.

Complications of RDEB include sepsis, malnutrition due to blistering on the inside of the mouth and skin cancer. Many diagnosed do not survive infancy, according to the Mayo Clinic. RDEB currently affects less than 5,000 people in the U.S., according to the National Institutes of Health.

The painful condition causes blistering, peeling skin that is as fragile as a butterfly’s wings

Thousands of people showed up to bring joy to a 3-year-old Missouri boy with a rare and incurable disease.

Tucker Langford of Kansas City city suffers from recessive dystrophic epidermolysis bullosa (RDEB), a painful recessive condition which causes peeling, blistering skin, per local news outlets KSHB, KMBC and the Kansas City Star. The condition is also known as “butterfly skin” because it makes the skin as fragile as a butterfly’s wings.

Tucker was recently released from Children’s Mercy Hospital in order to receive end-of-life hospice care at home, and his family decided to organize a parade to go by their house for Tucker to enjoy on Saturday, Oct. 11.

That’s when the local fire department stepped in to spread the word.

“To all of our fellow first responders, motorcycle riders, Jeepers, car showers and hot roders! Heads up! We need your help!!” began a Facebook announcement from Kansas City Fire Department (KCFD) Station 10.

They added that “Tucker’s favorite things are trucks, Jeeps, motorcycles, hot rods and emergency apparatus.”

“The family would LOVE for a showing of public safety to support Tucker and help bring joy to this little guy,” they continued, adding, “Help us out! Let’s give Tucker the final honor he deserves!”

In an update to the post, Station 10 shared that the location of the parade had been moved to a larger venue “due to the overwhelming support and outpouring of interest to participate.”

Tucker’s mom, Chandler, said she was overwhelmed when she saw the number of people who showed up for her son.

“When we were pulling [up to the parade], I was crying because seeing everyone supporting Tucker and our family means a lot to us,” she told local news outlet KHSB.

Tucker’s grandfather, Rick Langford, told the outlet that his grandson is known as “Tough Tucker” in their family because of how he has faced all the challenges thrown his way.

“He’s had that name since the very beginning,” his mom added. “Because the doctors told him that he wouldn’t make it to 1, and here he is 3. He’ll be 4 Christmas Eve. I bet you he will show everyone how tough he is.”

In a GoFundMe established by the family to help cover Tucker’s needs, they shared that Tucker was “missing skin on his feet, hands, lips and chest” at birth, and said he was diagnosed with RDEB shortly after.

They continued, “Despite his challenges, Tucker consistently brings joy and laughter to those around him. He loves talking about his trucks, playing with his baby brother, and spending time with his family.”

“Tucker is one of the best storytellers you will ever meet,” they added.

As of Thursday, Oct. 16, the GoFundMe has raised $40,975 towards an ultimate goal of $45,000.

Complications of RDEB include sepsis, malnutrition due to blistering on the inside of the mouth and skin cancer. Many diagnosed do not survive infancy, according to the Mayo Clinic. RDEB currently affects less than 5,000 people in the U.S., according to the National Institutes of Health.