Sophia Goodfriend is a very typical pre-teen. If you meet this vivacious 10 year old, you will notice her really cool pierced earrings, and fun clothing, and bright smile...and bald head.
COVID hit the Goodfriend family of Macedon hard... but they all recovered from the illness’ cold-like symptoms.
Sophia’s mother, Brigette was the first to test positive and she had it bad. Aches and trouble breathing, and coughing. “I tested positive for COVID in December of 2021, then everyone in the family had it, and got over it.
Later in February, Brigette gave in to her oldest daughter’s desire to try a fun hair dye. Since her hair needed to be clean to use the color dye, her mom washed Sophia’s hair, and...as she flopped her head forward to wash it, she noticed that a small area of her hair was missing. A small patch was visible of her scalp.
Brigette, who is a Macedon Police officer and her husband watched as Sophia lost yet more of her locks, and they started a search for answers.
“We were concerned for the missing patch and had no idea it was even possible to progress and eventually effect her whole body,” said her Mom.
Brigette and her husband and their kids, Skylar, Sophia, Stella and Samuel, continued their happy family life, but also began consulting with pediatricians, holistic doctors, and dermatologists to find answers. After a few weeks, when the patch continued to get bigger (they used a chart to keep track), the did not seem to find an answer.
After months, and reassurances that this was just a fluke and their daughter’s hair would grow back, it was determined that Sophia’s hair loss, which was now almost complete, was due to an immunity deficiently, following her COVID attack. Her condition was named as “alopecia
(a name for baldness). Her particular type was Alopecia Universalis. She lost hair over her entire body.
Two other types of the condition, Alopecia Areata (patchy loss) and Alopecia Totatlis (loss of hair on the face and scalp) affected many.
Specialists again reassured the Goodfriends that their daughter’s hair would grow back.
It has not.
Now dealing with head coverings, that included “fake” synthetic wigs (which were itchy and anything but natural looking, her mom began to look for human hair wigs. But most did not fit her head size. When she finally found a wig company in Fairport “ Foxy Hair Alternatives, owner Laura Fox suggested they contact a group called “Children with Hair Loss” (CWHL), where the family finally acquired a proper fitting wig.
We sent a picture of what Sophia looked like with hair to CWHL and they tried to match the color and style. She also wears hats, and scarves, and bathing caps when in the pool. She must keep her head covered to keep from injuring her expose head/scalp.
For her health and well being she wears covers, but not because she fear being different or stared at.
“If I am in a situation where there are kids, I will cover my head, but with family and friends, and outside of school, I sometimes do not,” said Sophia.
Doctors have determined that the COVID hijacked her immune system. It was fighting her hair follicles. . She tested positive from December 2021 until almost the end of 2022.
The Children with Hair Loss group have been supportive and incredibly helpful. The set the family up with a support group of kids with the same issues. CWHL will give Sophia a wig every year until the age of 21.
“We had to tell the school and the teachers about Sophia condition eventually and they, in turn, were to tell the class. She was in 3rd grade at the time. I thanked the teacher and the students who have been marvelous,” said Brigette.
The school has been so supportive.
One of the PE teachers, Mrs. Bufano gave Sophia swim caps, and both Mrs. Bufano and the Elementary School principal, Katy Lumb have donated their hair to the CWHL group.
“Our daughter, Skylar recently had her hair cut to donate. Our Stella wants to donate also, but, in our house, you have to be at least 5 years old cut your hair. So she will wait.”
Ironically, Sophia and Brigette had cut their hair and sent it to Pantene Beautiful Lengths. It was returned right after we met Laura Fox, with a note indicating they were no longer accepting hair donations.
Both of those hair pieces, send back to us, will now be send to CWHL, as well as Skylar’s donation. We are really hoping that all our hair might be used together to make a wig for some child in need, the proud Mom stated.
“We had a hair crimper in our house that Sophia found one day while cleaning her room, and the girls all wanted to play with it, and have a hair salon day. The other two felt sorry for Sophia not being able to use it, but she turned around and said, I can do YOUR hair and she had fun with that.”
Does she ever feel mad or sad about her hair loss, or being different? “Maybe once in a while, but mostly I am joyful and just used to it., admitted Sophia.
Recently, the Goodfriends met a man who was part of a martial arts competition, whose daughter, now in her 20s, has had the same hair loss issue since she turned 8 also. The families chose to connect the two girls to share their stories. They felt it was important to have someone to talk to who has been through the ups and downs of hair loss.
Sophia has temporary tattoos that are eyebrows, and there are eyelashes that glue on or are “magnetic”.
When I hug Sophia, and kiss here bald head, I notice how much she smells like she did as a baby. I love to kiss and smell her head,” Brigette announced smiling.
Sophia’s dad feels grateful too for all the help, the knowledge and the support. Parents share stories and suggestions and they keep in contact over the internet.
There is a yearly “gala” - a charity ball - dance, fashion show and fun family time in Michigan each year, hosted by CWHL. The kids dress up and are part of the fashion show. This will be the Goodfriend’s second Gala this fall.
Sophia dances with the Patty Flowerday School of Dance. She has been dancing with them for 6 years - since she was 4. “The dance teachers are so kind, that they even have changed the way the students style their hair to match how Sophia has to wear her wig.
In December 2022, Sophia finally stopped testing positive for COVID.
“Often kids are curious, but never mean to me,” admitted Sophia.
A woman came up to Brigette recently and just whispered: “Cancer or Alopecia?”. People notice, but are kind,”.
“The source of our joy is our faith in God and knowing He is using this circumstance for good,” said Brigette “Without this happening, we never would have met Laura Fox or all the other wonderful people through CWHL.”
