Auglaize County Family Shares Their Experience with Epidermolysis Bullosa (EB)
Eli’s Birth and Diagnosis
National EB Awareness Week is observed each year from October 25th – October 31st, but Minster, Ohio residents, Alex and Lindsay Monnier, have been promoting awareness and research for a cure everyday for the last two years.
The Monnier’s son, Eli, was born August 8, 2015, with Recessive Dystrophic EB which was noticeable as soon as he was delivered via c-section.
EB is a genetic condition resulting in the failure to produce Collagen VII, the protein that holds the layers of skin together.
Eli’s layers of skin are not attached resulting in his skin forming large blisters filled with fluid or blood and/or his skin shearing off from any form of friction or trauma (falling down, rubbing his face, etc.).
EB also affects the internal skin of the GI system (mouth, esophagus, intestines, rectum) resulting in difficulty eating, swallowing, and having bowel movements.
As Lindsay explains, EB causes scarring which results in webbing between the fingers and toes and joint contractures.
“It is a painful condition called ‘the worst disease you have never heard of’ by DEBRA of America, an organization dedicated to patient care and research,” notes Lindsay.
Eli as a Toddler
Eli is now a loving, outgoing, independent, and determined two year old.
He loves to yell at his beloved cat, Farrah, and thinks it’s funny when Farrah brushes her tail across his face.
As a people-person, Eli loves being the center of attention in a crowd.
He likes to make people laugh and his parents believe he will be a combination of the teacher’s pet and class clown because he plays the sweet and silly roles so well.
Eli does not allow his condition to get him down for long.
“His feet are his most affected area with the least ability to heal, yet he still walks on them all day long,” says Lindsay. “A new skill he developed at the end of summer.”
Eli loves to play on slides and swings, take wagon rides, go on rides at festivals, and ride around in his powered jeep.
Two of his favorite things are chocolate and music! He amazingly recognizes any song that is hummed or played to him without the words.
Like many kids his age, Eli loves watching Mickey Mouse Clubhouse, Sid the Science Kid, Wallykazam, Bubble Guppies, and Team Umizoomi.
He can count to 20 and knows his basic colors and shapes, as well as his ABC’s and several words that start with each letter.
Support and Resources
Help Me Grow through the Auglaize County Health Department in conjunction with ABC Early Intervention Services through the Auglaize County Board of DD have helped by providing services such as PT, OT and speech therapy in the home, which means less travel for Eli’s family to and from Cincinnati Children’s Hospital.
Eli also receives services through Home Health Care and the Ohio Home Care Waiver program.
One of the biggest areas of support for Eli and his family has been the support of the community.
“Our community has been a wonderful support system for us since before Eli was born and even more so after he was born,” says Lindsay. “We would not be able to make it through this difficult journey God put us on without the support of the people we live and work around.”
Awareness and Understanding
“There is not a universal treatment for EB,” notes Lindsay. “Every family develops their own preferred way of treating the wounds, and what works for one person may make another person worse.”
“You cannot develop EB by touching someone with it,” she explains. “It is not contagious.”
People with EB, however, can get an infection from someone else who touches them without taking proper sanitary measures.
EB does not go away or get better.
It progresses with age, and young Eli is now in need of a bone marrow transplant to slow down the progression of his condition.
According to Lindsay, the surgery, scheduled for February 2018, will allow Eli to develop some level of Collagen VII throughout his body, reducing the formation of blisters, strengthening his skin, allowing for faster and healthier wound healing, and reducing pain and inflammation.
As this type of surgery is only available in Minnesota, Lindsay will need to quit her job to stay with Eli while he is hospitalized and recovering from his procedure.
This will take a minimum of 5 months.
Eli’s father, Alex, will serve as Eli’s bone marrow donor and will be traveling to and from Minnesota to maintain his job here in Ohio.
A 50/50 fundraiser is being held to help support Eli and his family with funds going toward travel and medical expenses.
The family has a Facebook page for additional information and updates on Eli’s health and fundraising efforts.