Two years ago, an elementary school girl’s medical story went viral and was featured on news sites far from her Tennessee home.
Hanna Barrott, a member of The Church of Jesus Christ of Latter-day Saints in Ooltewah, Tennessee, has a condition called lamellar ichthyosis. Defined by firstskinfoundation.org, ichthyosis is “a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin and sheds as a result.”
Due to her condition, 8-year-old Hanna’s body regenerates her skin cells every few days as opposed to once a month. This causes her skin to be very dry, so she applies lotion to her entire body twice a day, along with other routine medical care to keep her body comfortable.
Her body cannot self-regulate its body temperature, hot or cold. Because she can overheat very quickly, her parents have to be very cautious about the activities she does each day.
Despite life’s obstacles, Hanna has proven that her condition does not define who she is and that her faith runs much deeper than her skin.
From the moment Hanna was born, her parents “knew something was wrong,” Megan Barrott, Hanna’s mother, said. She remembers laying in the hospital bed for hours after Hanna was born, not having seen Hanna at all or hearing any news from the doctors. She was confused and concerned and knew she needed to rely on her faith.
“I needed divine help, and I needed it right then and there,” Megan Barrott said. “I knew he would offer that to me if I would turn to him, and so I did. I plead to my Heavenly Father and very quickly felt a sense of peace and calm. We had family and friends from all over, including people we didn't even know, praying and fasting for her. We felt their prayers and their faith. We knew Hanna would be okay, whether that meant returning to her heavenly home or staying here with us and living a different life than we imagined.”
To the Barrott family’s relief, they were able to take their baby home after a 10-day stay at the neonatal intensive care unit of Vanderbilt Children’s Hospital in Nashville. As Tyson Barrott, Hanna’s father, explained, their faith has continued to help them accept her diagnosis and comfort her throughout her life.
"Knowing that she will have a harder life than most, it comforts me to know that Heaven will be watching over her, and that even though we don't know all the details of the plan, we know there is a plan and this is part of it and God remembers all his children,” Tyson Barrott said.
Now, eight years later, Hanna continues to live and love her life, despite her condition. Hanna enjoys weekly dance classes and has a great love and talent for arts and crafts. She wants to be a teacher, author and illustrator when she grows up.
“She is always creating book covers and writing stories at home; her creativity amazes me,” Megan Barrott said. And in addition to her own confidence and creativity, Hanna is surrounded by supporters.
“She has an amazing group of friends who love and support her, who see past her differences. It’s heartwarming to see how they interact with each other at school,” Megan Barrott said.
When they heard they could support her by wearing blue throughout May for Ichthyosis Awareness Month, Hanna's classmates responded with excitement.
“She surprises me sometimes,” Megan Barrott said. “It's beautiful to watch her explain to another child what she has, and then to see them play together afterwards. We all crave understanding and fear the unknown. It's only natural for people to stare, so we are as kind as we can be, even when it's hard.”
As Hanna has grown older, she has become even more outgoing and confident. She loves to sing songs from the Primary Children’s Songbook and participate in Church.
“She has made friendships with the other Primary children, and has become comfortable with them,” said Aprile Nielsen, the stake Primary president in the Chattanooga Tennessee Stake. “She has learned that Primary is a safe place where she is loved and understood by so many. I'm impressed that she has tried hard to develop relationships with the other children.”
Hanna’s schoolmates have also embraced her and supported her. According to one of her teachers at school, Janet Bartley, on days when the weather was too hot to go out to recess, Hanna, who recently finished second grade, would always have a buddy stay inside and play with her.
“I think what impressed me most was Hanna's determination and courage to try do everything she could possibly do,” Bartley said. “She didn't want to miss out on anything. She worked hard academically, physically and emotionally to do her best.”
Bartley said how amazed she is at how accepting children are toward other children with disabilities and challenges if you educate and answer the questions they have along the way.
Megan and Tyson Barrott have been in situations where both children and adults stare at Hanna, not quite knowing how to react. The Barrotts have found it effective to simply say hello with a smile, introduce themselves and tell them a little about Hanna.
“It instantly breaks the ice and they are ready to ask more questions, or at least be more receptive to someone who looks different,” Megan Barrott said. “I think it's a great way to build Hanna’s confidence, going up to people and introducing herself. I always give her the choice when anyone asks her about her skin, whether she teaches them or I do.”
Megan Barrott said they've tried to be prepared and learn from when people aren't as accepting.
“Not all children and adults are as accepting of Hanna’s differences, but we understand this is part of the process,” Megan Barrott continued. “We try to prepare her for these things and teach her that not everyone understands. It is extremely tough. As a mother, Mama Bear wants to come out every time something negative happens but I feel God teaching me through these experiences too.”
Megan Barrott has found herself biting her tongue on many occasions. “I often have the thought come to me: ‘Forgive them, they know not what they do,’ and it gives me greater perspective and patience. That scripture has become my personal mantra.”
According to Nielsen, who knows Hanna through Primary teachers, the love Megan and Tyson Barrott have for their daughter is inspiring.
“They want Hanna to be able to play and grow, learn and experience, and have all the joys that come from being a child,” Nielsen said. “As parents, they have to not only protect but prepare Hanna for a lifetime of being misunderstood and treated differently.”
Throughout Hanna’s trials and triumphs, her parents and teachers have enjoyed watching her grow to become a “happy and faithful person who loves everyone she meets,” Megan Barrott said.