September 2025 - Sophia Grace Ramsey
- Elliana's Army
- Sep 7
- 3 min read
On April 20, 2019, Sophia Grace Ramsey was welcomed into the world by her loving parents, Katie and Tim Ramsey. It was apparent from her beautiful eyes that she was a very special little girl. She would also prove to be the bravest person they have ever met.
Shortly after she was born, Sophia was diagnosed with a devastating genetic disorder: Junctional Epidermolysis Bullosa (JEB). The type of EB that Sophia had caused severe damage throughout the inside of her body, and her subtype is considered terminal in early childhood. There is currently no treatment or cure for JEB; the only option is to do painful wound care and wrap all the wounds in bandages, which takes hours each and every day.
Over the next few months of Sophia's life, she learned how to explore the world as a baby with EB. She wanted to experience the same things as every other baby: playing, dancing, tummy time. But, her EB made all of these things difficult for her. As the months went on, her skin became more and more affected, and so more and more of her little body had to be bandaged. Sophia was incredibly brave for her bathing and bandaging sessions, which were surely excruciating for her.
Sophia's condition began to worsen, with her airway narrowing, causing her to choke often and wheeze deeply as she tried to breathe. Her mouth, esophagus, and GI tract became injured, making eating painful at times, causing intense reflux, and preventing her from gaining weight. Despite all of this, Sophia was starting to smile all the time, laugh, and even babble at times.
At 4 months old, Sophia entered a clinical trial through EB Research Partnership that required a Picc Line placed. Unfortunately, the skin from her leg was ripped off during this surgery, and it would never fully heal. But, miraculously, the trial medication seemed to be improving her airway, and slowly, her breathing quieted and the choking became less frequent.
Eventually, Sophia's Picc Line became a problem - it fell out, and the skin around it got severely infected. Unable to get a new one in safely, Sophia had to wait a few months to heal as much as possible. With her breathing continuing to get worse, she finally got an opportunity to get a port placed. But, once again, this surgery caused massive damage to her skin, and she went into cardiac arrest. Thankfully, she made it through surgery and was able to be discharged a week later.
February 2020 was a turning point for Sophia. She got a corneal abrasion that caused her immense pain, and she didn't open her eyes for a month. Her GI issues were becoming severe, and she was losing weight and nutrients rapidly. Her skin was becoming more and more damaged. Her light was slowly fading.
When Covid hit the nation in March 2020, it surprisingly gave Sophia and her family a chance to rest together at home, as it was too risky to take her to her doctor appointments. During this time, Sophia started to feel a bit better, and even gave her family one last smile. She made it to her first birthday, but spent most of it sleeping and resting in her parents' arms.
Sophia lost her battle to EB on May 15, 2020, when she slowly stopped breathing and her heart stopped. Despite multiple attempts to resuscitate her, sweet Sophia was gone.
Katie and Tim Ramsey turned their grief into action by creating Sophia's EB Hope. They've donated funds raised to organizations such as EB Research Partnership and debra of America. They've been some of the biggest supporters of Elliana's Army events, including Wings of Courage and the Elliana's Hope for Healing Memorial Walk.
You can honor Sophia by purchasing a Sophia's Hope t-shirt from our shop, available September 2025 only. All proceeds raised will go towards EB Research Partnership and their fight to find a cure for this awful disease.
Purchase a Sophia's Hope shirt to show your support and share her story:
Donate in Sophia’s Memory: https://give.ebresearch.org/campaign/sophias-hope-to-cure-eb/c346214