On the morning of October 8, the family of Sophia Grace Ramsey — her parents Katie and Tim Ramsey, her grandfather Don Ramsey, and her 5-month-old brother Brayden — gathered around her memorial garden at Castle Hill Farm in Newtown.

Sunlight cascaded through the branches of the tree at the garden’s center. Around it was a variety of flowers to help pollinators, as well as decorative pumpkins and gourds grown at the farm.

In addition to the natural beauty was a sturdy plaque that showcased a laser-etched image of Sophia with her joyful bright eyes and big smile.

Looking at the picture, and the framed one being held in her father’s arms, it is clear that Sophia also had raw, blistered skin on her cheeks, chin, and fingers.

Sophia was born with a rare genetic skin disorder called Epidermolysis Bullosa (EB).

According to Katie, “mutated genes prevent the layers of skin from binding together, meaning that the slightest friction will cause the skin and internal membranes to blister, tear, and wound.”

“There are four subtypes: Simplex, Dystrophic, Junctional, and Kindler Syndrome,” she said. “Sophia had the most severe subtype, Junctional, which causes severe external wounds as well as wounds internally throughout the body. All forms of EB are life-limiting and excruciatingly painful, and the most severe subtypes are terminal.”

When Katie and Tim welcomed their baby girl into the world, they did not know what EB was, but they noticed Sophia had a few scabs on her body.

She was sent to the neonatal intensive care unit (NICU) with the thought that the skin issues may be caused by a viral infection. However, all viral, bacterial, and fungal tests came back negative.

“We were sent home thinking everything was okay. In the next few days, large blisters formed on her body, and they turned into large open wounds. Because EB is so rare it took weeks to be connected with a specialist who knew it looked like EB, and a biopsy confirmed this at about one month old,” Katie said.

When Sophia was about 3 months old, the family learned that she was being diagnosed with the most severe form of the disorder.

“EB caused Sophia excruciating pain,” Katie shared. “She had to have daily wound care that lasted up to three hours, and special baths to debride her wounds. It caused damage to her esophagus, so eating became difficult and she struggled to gain weight. It caused damage to her airway and scar tissue narrowed her airway so badly that she could not breathe.”

Despite everything Sophia went through due to EB, Katie describes her as a being very resilient and that she would often smile and laugh.

Katie recalled, “Sophia was so sweet, patient, silly, and engaging. She loved to look you right in your eyes and give the biggest smile. She loved being silly and watching us make silly noises and dances. She loved to cuddle and snuggle.”

She continued, “She was so resilient — she endured long and painful wound care every single day, and she endured several surgeries, one of which she suffered a cardiac arrest during, and she still woke up with a smile on her face. Sophia was truly a radiant, beautiful soul and we miss her so very much.”

On May 15, 2020, Sophia passed away at 13 months old.

‘Save Other Children’s Lives’

While Sophia may have had a short time on earth, her impact on people’s lives continues on through the work of her loved ones. Sophia’s parents founded Sophia’s Hope to Cure EB, which is a subset of the EB Research Partnership (EBRP).

“Essentially, we are a campaign that does fundraising on the EB Research Partnership’s behalf. Sophia’s Hope is not a 501(c)(3) nonprofit itself, but all fundraising benefits EBRP and our online fundraising platform is through their organization,” Katie said.

The organization takes part in local events, including the recent Monroe Apple Festival, to help spread awareness and raise funds.

Earlier this summer, Sophia’s grandfather Don, who is a Newtown resident and retired Newtown Middle School teacher, hiked Connecticut trails with her photo to share her story with the public.

On September 23, Sophia’s Hope to Cure EB posted on its Facebook page that a memorial garden had recently been created in Sophia’s honor.

The post reads, “We are so grateful for the family at Castle Hill Farm for creating this beautiful memorial garden for Sophia. And for Sophia’s grandparents, Don Ramsey and Barbara Ramsey, for placing this beautiful plaque. There are plenty of fall activities to visit at Castle Hill Farm in Newtown — drop by and visit Sophia’s Butterfly Garden right by the pavilion while you are there!”

Katie said that the garden came to be thanks to the close friendship of Don and Castle Hill Farm Owner Diana Paproski.

“She and her family have been so supportive of our mission in memory of Sophia, and they are such generous people,” Katie said. “Diana offered the memorial garden to honor Sophia and to be a way to help raise awareness about this terrible disease and the need for research.”

She added, “Our hope is always for someone new to ‘meet’ Sophia and be moved by her story, and to hopefully join us in the fight to cure EB. EB is so rare that it is lacking in awareness. If we can increase awareness, we can increase funding for research that will save other children’s lives.”

Ways To Help

EB Awareness Week is October 25 to 31, and the Ramsey family hopes that the public will use this time to follow them on Facebook and Instagram @sophiasEBhope to learn about EB and join them in their fundraising.

“This winter we will be launching a Pay-It-Forward Kindness Campaign to spread kindness in memory of Sophia,” Katie said. “In March, we partner annually with another local family in their awesome event, The Plunge for Elodie (honoring a little girl living with EB in Greenwich, Connecticut) in which we plunge into the cold ocean to raise money for EB Research.”

Sophia’s Hope to Cure EB also runs its Rock Painting Campaign throughout the year, which encourages people to paint rocks and then place them throughout their communities to raise awareness for EB Research.

“EB may be considered ‘rare,’ but it affects more than 500,000 people worldwide, meaning that 500,000 people are living with daily excruciating pain that has little treatment available,” Katie said. “We know Sophia’s hope would be to see an end to all of this suffering, so that kids like her can enjoy pain-free and full lives.”

To learn more about Sophia’s Hope to Cure EB and to donate, visit sophiasebhope.org and follow on social media. For more information about EB, go to ebresearch.org.

Reporter Alissa Silber can be reached at alissa@thebee.com.