By Renee Williams
Last year for her 9th birthday, Frances Brown knew exactly what she wanted: musician Willie Nelson, comedian Ellen DeGeneres and former Aquinas football quarterback, Liam Welch to attend her family birthday party. “Franny,” as she is affectionately known by friends and family, got her wish when Liam Welch and his brothers joined the festivities but remains a little uncertain why Willie Nelson and Ellen DeGeneres did not save the date.
Not at all surprised by their daughter’s optimism, Frances’ parents, John-Clark and Ashley Brown quickly recognized Frances request as one that ultimately defines the spirit of the life they live with Frances—a life filled with hope, faith and endless possibilities.
On January 29, 2007, Frances Brown was born one of only 89 children in the world with a rare genetic syndrome known as Macrocephaly-capillary malformation. M-CM is a multiple malformation syndrome that causes body and head overgrowth and abnormalities of the skin, vascular system, brain and limbs.
According to M-CM network, M-CM was first identified as a distinct syndrome in the late 90s and has recently been attributed to a genetic mutation in the PIK3CA gene that occurs after cell division. Common signs include macrocephaly (larger than normal head), congenital macrosomia, extensive cutaneous capillary malformations such as a port-wine stain type birthmark over much of the body, body asymmetry of the hands and feet, lax joints, doughy skin, developmental delays and neurologic problems such as seizures and reduced muscle strength.
Becoming a parent is always a life changing experience but when Ashley and John-Clark Brown had a child with special needs, the parenting experience became one that involved personal growth and new connections.
“I did not know that Frances had a rare syndrome until the day that she was born,” Ashley says. “The second they lifted Frances up, I knew and so did everyone else. From her neck down, Frances was modeled in what looked like a port-wine stain and her feet were very different and bigger. Frances spent a week in the NICU and I came home to this whole room full of flowers, but without Frances. It was very lonely and scary. Our pediatrician, Dr. Douglas Nesbit who is a serious superhero and wonderful man had geneticist, Dr. David B. Flannery come see us and it was odd because Dr. Flannery was supposed to travel to Athens, Ga., that day, but for whatever ‘God wink’ reason, he did not travel.”
A Source of Encouragement
After Frances was born, Ashley began to open her eyes to the positive affirmations and coincidences in her life that she considers “God winks.” A “God wink” is that reassurance that gives you strength, purpose and keeps you going, Ashley says. “A little nudge back from God that says, ‘Hey, I heard you.’”
Prior to Frances’ diagnosis, Ashley immersed herself in literature while searching for answers. “When you have a child with a rare syndrome, you quickly become clinical.” Frances was diagnosed with M-CM at 4 months old and Ashley began to gather information and the strength necessary to begin acceptance and healing.
Ashley recalls, “I learned quickly that I might be on one part of my grief cycle, while my husband was on another, so it was important for us to say to one another, ‘Do not cry alone. Let’s lean on each other.’ I will tell you that my husband, John-Clark rocks,” Ashley says. “He is very much a part in helping Frances get to her appointments, therapy and is a great “Franny” cheerleader too. John-Clark and Frances are close and speak their own language.”
Finding power in knowledge, Ashley began to encourage open and honest communication with her family, friends and everyone she met. “My faith has grown tremendously on this journey. There is no mistake that we were given a gift when Frances was born,” Ashley says. “It is a privilege to be her mother, even in the hard times.”
Ashley continues, “Frances condition is not rainbows and butterflies, it stinks and I want John T (Francis’ brother) and others to know the truth. I want people to ask, ‘What is wrong with her hands and feet?’ As parents, we think it is inappropriate to ask but the second we hush children or shut them down, we start that space where now they are afraid and have anxiety about that person. If we just answer the questions, then they move on like I did. It is about loving people as they are, the heart of the biggest lesson that we teach our children and model for others.”
When Frances was only 6 months old, she underwent her first surgery at Children’s Hospital of Georgia where amidst everyone’s fear and anxiety, another reassuring “God wink” occurred.
Pediatric pharmacist, Kelley Norris, was at work that day and caught a glimpse of Frances, a child that would ultimately change her life, lying in a hospital room and wearing a pretty peach nightgown.
“As we go along in life, we have what Ashley calls, “God winks,” Norris says. “If you do not open your eyes to everyday situations then you will miss the gifts that you have been given.”
Norris did not meet the Brown family that day but would have another chance encounter with Frances one year later.
Building a Bond
“Frances was sitting beside me at my son’s soccer practice one day and I decided to pick her up because I saw some ants around her. I thought Frances was different but I was not sure. I remember Ashley looking at me when I picked Frances up and I did not know Ashley then so judging by her look, I thought I had done something wrong. Ashley paused, looked at me and said, ‘Nobody has really ever picked Frances up before.’”
With that simple act of caring, Ashley and Norris would begin a friendship that would eventually arrange a community of supporters to raise awareness for children with special needs.
“Frances and I just took to each other immediately,” Norris says. “Ashley called me later that night and asked me if I was a nurse. I told her I worked at the Children’s Hospital of Georgia and then I suddenly remembered the day I saw Frances in the hospital in her peach nightgown. I remembered everything. It was like we were placed there for a reason.”
Norris divides her life into two categories: life before Frances and life after meeting Frances. “I call her my third daughter,” Norris says. “I have been put in situations where not only do I see the blessing that Frances is but also the blessing that she is to others. I have learned to find joy in every situation and in every challenge, because there is always hope and joy in any situation. Frances makes other people believe in themselves and to persevere.”
In 2010, Norris committed to running the Augusta Half Marathon-10k with a friend, Mary Covington Coleman. While preparing for the race, Norris had the idea to run in honor of Frances so Norris and Coleman formed a team of two and called themselves Friends of Frances.
On Sunday, Feb. 26, 2017, Augusta University will present the Half Marathon, 10k and 5k race sponsored by the Augusta Sports Council. Norris will organize and lead the 6th Annual Team Friends of Frances to raise awareness for children with special needs or rare diseases. All donations and proceeds from shirt sales and the after-party, go to help children like Frances. More information can be found at friendsoffrances.org. Registration is open for the Augusta University Half Marathon 10k and 5k, while registering participants can chose Friends of Frances as their team. More information can be found at augustahalf.org.
Norris says, “We are a grass-roots organization and our main source of fundraising is to raise awareness. We began to expand our vision when we realized that medical availability, therapy and equipment become less readily available as children with special needs get older. Our big vision is to help all the little people that are unseen or do not have the means yet have the greatest needs.”
Ashley adds, “We recently had that ‘aha’ moment when we realized we had more support than ever before with Friends of Frances and there were children that were still getting left out or slipping through the cracks. Last year, the Friends of Frances team raised enough money to ensure that a wheelchair-bound child, who was unable to leave his house, can now get out and go somewhere with a proper lift on his father’s car that powers his chair.”
In support of the race, Friends of Frances sells t-shirts with a logo of a heart with Frances’ sign over the heart that reads, “Hope, it’s in your genes.” Ashley says, “Hope is never ending. Hope reminds me of a bright blue sky with nothing to encompass it or hold it. It is possibilities. For Frances, it is hope that she does continue to fight in this way and make it through some of these obstacles that she has, but knowing that it is in God’s will.”
Diana Renee Williams is an accomplished freelancer, Huffington Post contributor and mother of two. She is a music lover, travel enthusiast and super soul spirit junkie. Prior to freelancing, she worked as a court appointed special advocate and domestic relations mediator focusing on her passion of service to the community.
This article appears in the October 2016 issue of Augusta Family Magazine.
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