Newtown resident Don Ramsey found more than Connecticut’s majesty along the state’s trails this spring, when he took up a challenge in his granddaughter’s memory.

One park at a time, Ramsey has been raising awareness about a rare genetic illness, epidermolysis bullosa (EB).

At each park he has visited since the Connecticut Department of Energy and Environmental Protection (DEEP) parks division announced its annual Sky’s the Limit Hiking Challenge locations, Ramsey has carried a framed photo of his beloved granddaughter Sophia Grace Ramsey, born April 20, 2019, to Tim and Katie Ramsey.

The picture, held in a wooden frame, shows a smiling Sophia, appearing mid-laugh, but there is a large tear about to fall from her right eye. Her cheeks are rosy from the painful-looking marks of EB, but her eyes are upturned in wonder.

Sophia died on May 15, 2020, due to complications from EB.

For Ramsey, that picture “captures the beauty of her eyes, her smile, and her innocence,” and he has brought it with him to each park to raise awareness about “the Butterfly Disease... the worst disease you never heard of,” he shared in a recent e-mail.

As he has met people along the trails, Ramsey has been sharing Sophia’s story and information about EB research fundraisers, like Sophia’s Hope, sophiasebhope.org, started in Sophia’s honor, and the Plunge for Elodie, ebresearch.org/plunge-for-elodie.html. He also shares information about the EB Research Foundation, ebresearch.org, and DEEP’s Sky’s the Limit Hiking Challenge.

And at each park, Ramsey poses for a photo with Sophia’s framed photo to share on his personal social media accounts.

“It does feel very healing to be able to go around with her picture to all these parks,” Ramsey said in a phone interview.

“EB has many classifications,” Ramsey wrote. “Sophia had the most serious rare genetic form (Junctional EB), where proteins are absent to allow skin layers to bond,” Ramsey wrote. “Both internally and externally, wounds appeared that rendered her vulnerable to infections, dehydration, excruciating pain, and organ damage and failure. Particularly the respiratory and digestive tracks.

“Continual care-giving required special bandage changing,” Ramsey shared, “feeding techniques, pic lines, and nebulizers to administer the Gentamicin experimental therapy. Sophia’s parents, Katie Ramsey and Tim Ramsey are absolute heros in their efforts to save their daughter.”

Both sides of her family offered Sophia continuous support, according to Ramsey. Along with medical care, they provided cuddles, sang to her, played with her, made special clothes that would not be abrasive to her skin, “and did all they could to give Sophia the richest love of life and joy possible.”

“Her parents Tim and Katie are heroes,” Ramsey wrote later, “in every meaning of the title. I sure do love them and I am honored to take every opportunity I can to support Sophia’s Hope and any other cause that honors Sophia that they may lead me to.”

By March 30 Ramsey had been to 14 parks on this year’s Sky’s the Limit Hiking Challenge.

He has met many people and learned a lot about the state’s parks along the way. The retired Newtown Middle School technology education teacher coined the term “learn with moxie” with his students, and has always enjoyed the outdoors. From his travels, Ramsey reflected that he has learned that “people will show you the world.”

Now he is bringing his brand of moxie outdoors and hoping people will be inspired to learn about EB. As “you never know who may read an article or who you may run into along a trail,” Ramsey said someone who learns about EB through his efforts may make a big difference, either through a donation or something else.

And taking one step at a time, one picture at a time, at one location at a time, has been helping him to feel bonded with his granddaughter along the way. He feels that Sophia wants him to complete this challenge and not to wallow in sadness and depression.

Even as an experienced trail and outdoor enthusiast, Ramsey said that from Osbornedale in Derby to Devils Hopyard, he has been surprised by the size and diversity of Connecticut’s parks. He has seen covered bridges and a diversity of plant life, climbed rolling hills, spotted beautiful vistas, and walked to an island only accessible by foot at low tide.

The Sky’s the Limit Hiking Challenge is like “a scavenger hunt,” he explained.

Take Up The Challenge

According to a release from DEEP, the Sky’s the Limit Hiking Challenge began in 2015 to promote hiking in Connecticut’s state parks and forests. This year’s challenge has 20 trails within various Connecticut State Parks and Forests. Those who complete the challenge will receive a “Sky’s the Limit” hiking staff medallion and certificate to commemorate their accomplishment.

“Sky’s the Limit is a great way to explore Connecticut’s state parks and forests while joining others in a friendly challenge to visit all 20 locations handpicked by those who know the parks best — the staff of our state parks system,” said DEEP Commissioner Katie Dykes in the release. “Our state parks and forests, which are free to enter for those driving Connecticut-registered vehicles, thanks to the Passport to the Parks program, are such tremendous resources for us in this state, and their importance was underscored in 2020 by the significant increase in usage we saw due to the pandemic. We anticipate that will continue this spring and summer, and the Sky’s the Limit Challenge is a great way to get acquainted, or re-acquainted with many of our wonderful state parks.”

Participants in this friendly competition have the opportunity to receive a medallion and certificate for hiking to 15 designated locations, according to DEEP. For hiking all 20 locations, 50 people will receive a hand-carved hiking staff. Names will be drawn from all who complete the 20 designated hikes, according to the release.

DEEP also encourages every visitor to be an environmental steward by carrying out trash — “leave no trace” and help ensure that public lands remain clean and healthy for all organisms. DEEP also asks challenge participants to “practice safe social distancing when in State Parks or Forests. Keep a minimum of six feet of distance from other people, wear your mask when passing near other people, and allow proper distance when encountering others by ceding the trail to allow others to pass. If you’re not feeling well, stay home.”

Specific instructions on how to complete the Sky’s The Limit Challenge are available online at portal.ct.gov/deep/state-parks/skys-the-limit.

The 2021 Sky’s the Limit Hiking Challenge locations are:

• Dinosaur State Park, Rocky Hill

• Lovers Leap State Park, New Milford

• Silver Sands State Park, Milford

• Hammonasset Beach State Park, Madison

• Black Rock State Park, Watertown

• Chatfield Hollow State Park, Killingworth

• Collis P. Huntington State Park, Bethel, Newtown & Redding

• Southford Falls State Park, Oxford

• Wharton Brook State Park, Wallingford

• Wadsworth Falls State Park, Middletown

• Peoples State Forest, Barkhamsted

• Ferry Landing State Park (DEEP Marine Headquarters), Old Lyme

• Kent Falls State Park, Kent

• Cockaponset State Forest, Chester & Haddam

• Sherwood Island State Park, Westport

• Devil’s Hopyard State Park, East Haddam

• Stratton Brook State Park, Simsbury

• Salmon River State Forest, Colchester

• Osbornedale State Park, Derby

• Rocky Neck State Park, East Lyme