Ebony Patrick is a typical Grade 2 student who loves playing with her friends, snuggling with her pet cat, playing hockey and reading her favourite books.
But the outgoing seven-year-old has also battled numerous health issues since birth and her latest, alopecia areata, is one her mom, Jennifer Patrick, is taking a different approach to, thanks to a conference this summer hosted by the National Alopecia Areata Foundation.
“She is a very happy little girl but she is getting to that age when she is developing self-awareness and I want to make sure her she has a healthy self-esteem,” said Patrick.
Alopecia areata is an autoimmune disease that can involve hair all over the body. The immune system, for unknown reasons, attacks the hair root and causes hair loss. Currently Ebony has small round patches of hair loss on the crown of her head, which has worsened since her original diagnosis at the age of two and a half. She has scarring on about 90 per cent of the loss sites (meaning these areas, even with treatment, will never be able to re-grow hair), and her condition could develop into the more severe forms of alopecia totalis or universalis later in her life.
“There are different treatments such as cortisone injections and homeopathic remedies, although those can be expensive,” said Patrick, adding that there is currently no cure, only treatment.
Patrick’s goal is to take her daughter to the foundation’s annual conference in San Antonio, Texas in June.
“This is a conference for kids and their families to get together and meet others who are going through the same thing,” said Patrick, a medical office assistant at the Vernon Family Doctors Medical Clinic. “It has courses explaining this disease and information on research for cures and trials. This conference will allow Ebony to attend daily children’s camps with other kids, and offer the opportunity for myself and our travel companion to attend workshops, seminars and support groups, and give us all the chance to learn as much as we possibly can about support, treatments, and current research on this disease.”
The only stumbling block is cost: hotel, flights, food and transportation will total around $3,800 so Patrick has set up a fundraising page as well as a Facebook page, where donations of any amount are welcome.
“I think it will be good for Ebony to meet others and for me to learn how to help her and both of us to deal with all possible outcomes, whether it be full hair regrowth or complete hair loss.”
If Patrick’s name is familiar, it’s because she is the founder and organizer of Vernon’s A Walk to Remember from 2004 to 2013, a pregnancy and infant loss awareness event she started after the stillbirth of her son Connor in 2004.
For her part, Ebony is looking forward to the conference, but is also focused on her day-to-day life, which centres around her Grade 2/3 split classroom at Harwood elementary school, where she has taken advantage of her love of reading: 150 books so far this year.
“I like funny books and I love music and singing and I love playing hockey,” she said. “And my favourite hockey player is Matty Saharchuk.”
Ebony can be found cheering on her favourite player when she watches the Vernon Vipers’ home games.
“She has gone through a lot; I know there are people who are worse off than us, but this is something I need to do for my daughter,” said Patrick. “Alopecia is not life-threatening but it is life-altering.”
To make a donation, go to Ebony’s page at www.gofundme.com or www.facebook.com/impactforebony
