Please help baby Allie struggling with rare skin condition

Please support baby Alexandria struggling with Epidermolysis Bullosa

On August 24th at 11:52 p.m., my best man, Aaron Cote, and his wife, Rebecca, welcomed a beautiful baby girl, Alexandria Lee, who weighed 6 lbs 8 oz.

Allie was born in agonizing pain. She had large extremely painful areas of missing skin on her knees and feet and required immediate specialized care. The hospital where she was born was unable to place an IV. That combined with her not being able to eat due to small mouth blisters, made it a race against the clock to get her to a NICU facility that would be able to place an umbilical catheter to give her nutrients and much-needed pain medication.

A highly specialized medical transport team arrived at 3:00am to take Allie to the NICU facility. Because Allie had so many specialists in the ambulance, her parents Rebecca and Aaron had to follow in their own vehicle for an hour-plus drive only 12 hours after Rebecca gave birth.

For the next 16 days, new parents Aaron and Rebecca would stay by Allie’s NICU crib, over 1.5 hrs from home, learning about her (at the time suspected) condition and how to care for her.

Eventually, Allie was diagnosed with a rare, severe, and incurable genetic skin condition called Recessive Dystrophic Epidermolysis Bullosa (RDEB). RDEB prevents Alexandria's body from producing a crucial protein (COL7A1) that binds layers of skin together. This means her skin blisters easily with any friction, requiring constant care and protection. There is no cure for EB, only management of symptoms and complications.

While her birth wounds are beginning to heal, she faces a lifetime of developing new blisters from even the gentlest touch. Children with EB are sometimes termed “Butterfly Children,” because their skin can be as fragile as a butterfly’s wing.

From the moment Allie was born, despite the terrifying circumstances, her parents Aaron and Rebecca have poured their hearts into her. The Cote family's life now revolves around Alexandria's care:

-Bandage changes every other day (or daily as needed), involving multiple layers of specialized dressings

-Visits to specialists located 1.5 hours away

-Adapting their home for Allie's development & creating a sterile bandage-changing area

-Sourcing adaptive clothing, toys, bedding, and bottles

Rebecca, Alexandria's mother, has left her job to provide full-time care for their daughter. Aaron continues working from home, balancing his self-managed business with supporting his family's new needs.

How Your Support Helps

Your generosity will make a crucial difference in Alexandria's life and her family's ability to provide the best care possible. Funds raised will directly support:

1. Medical supplies and over-the-counter treatments not covered by insurance

2. Travel expenses for frequent medical appointments

3. Home modifications to ensure Alexandria's safety and comfort

4. Adaptive equipment and specialized clothing

5. Potential clinical trial expenses, offering hope for new treatments

6. Reliable transportation for long-distance medical travel

A Message from the Cote Family

“Every day with Alexandria is both a blessing and a challenge. Her strength inspires us, but the road ahead is long and uncertain. Your support will help us provide the specialized care Allie needs to thrive despite her condition. Every contribution, no matter the size, makes a real difference in our daughter's life. Thank you for your generosity and for joining us on this journey.”