There is another side to pediatric disabilities and chronic illness that many do not want to talk about, or don't know how to address, but some of us have had to live through it - that is the death of a child. One of my dear friends, Alysin, had an amazing daughter that lived with a RARE genetic condition, RAS-Associated Autoimmune Leukoproliverative Disease (RALD). In fact, Avery was one of only five diagnosed children in the world. From an early age, Avery Ayan dealt with the challenges of living with a rare genetic disorder as it wreaked havoc in her body from the time she was about 18 months old. This included, multiple infections, respiratory issues, seizures, and so much more. Unfortunately, Avery's body could not sustain the long-term assault this condition caused on her body. Sadly, there are some kids living with chronic illness that do not get the opportunity to enter into adulthood. The loss of a child leaves a hole in your heart, a hole that nothing can fill and you often wonder as a parent, what more could I have done. If you know Alysin and her amazing daughter Avery, then you know that momma did everything possible to keep her child healthy and strong.
Despite their best efforts, Avery's genetic mutation threw her a series of events in April of last year, that she could not recover from. Alysin has spent the past year trying to understand what caused her daughter's death. She has been brave enough to speak with the local coroner's doctor personally. He even offered to send the results to Emory University for further research. Alysin also reached out to the PICU doctor on call during Avery's stay at Tampa General, and sent Avery's tissue samples to the National Institute of Health (NIH) for further research as they were the ones who diagnosed this sweet girl many years ago and reserached her and her condition, RALD, over the years. Despite all these efforts, Avery's family has had to begin to accept that they may never know the full reason behind their daughter's passing. As families like Avery's learned early on, medicine is never black and white....there are so many shades of gray. Doctors don't always have the answers, but they work tirelessly to learn more about our rare children in the work they do. This was Avery's hope too - for others to learn from her life, so that new and better treatment could become available for the future "Averys" of the world. Avery dreamed of being a doctor one day - a doctor who worked at the NIH. Here are her own words on her condition and her dreams for the future:
- Avery Ayan, age 13
So, as we approach the one-year mark, of Avery's passing, April 10th, I am going to allow Avery and her family to "Takeover" this blog as I share some of their story in their own words and a few of mine.
One area RALD played a significant role in Avery's life growing up, was in her size. She was always small for her age, up until a few months before her passing, when she hit a growth spurt. In fact her size was the first story I heard about this sweet girl. My daughter, Neeley, had just started at a new middle school and was getting picked on for some of her own medical issues.
When out of no where this pint-sized, 4 ft, raspy-voiced girl from Neeley's art class intervened, "Who do you think you are - huh? Leave Neeley alone or..." This 5'6" bully (that's big for middle school) looked Avery up and down and responded, "or what?" Avery quickly quipped, "or I will kick your ass!" Something about her tone and demeanor told this guy that she meant it! He then just gruffed and walked away. Avery and Neeley became instant friends from that moment on. In fact, Neeley came home that afternoon and said, "Mom, I just met my new best friend!" and proceeded to share her adventures of the day. Avery was always a kid who stood up for herself and others when she needed to - she even spoke about her small stature for a school speech. Check out the video above.
Avery was not only someone who stood up for herself and others, but she was a young woman, who like her mother, wanted to continually educate other's on her rare condition and worked to support research in this area. She wasn't someone to shy away from an opportunity to dress up and travel to an event that supported local children's hospitals and the work being done at the NIH. In fact, she and her mom traveled to Washington D.C. to speak at a fundraiser for the NIH Children's Inn about Avery's personal experiences of living with a rare disorder. In this YouTube video, these two amazing women share their story - start it at the 14:35 mark for the Ayan girls! I promise it is worth the watch! Did I tell you how much I miss that raspy voice of hers.
The other thing that stood out most to me about Avery, besides that raspy voice and petite build, was her pure desire to just be normal. Like many kids with chronic medical conditions, Avery wanted to be treated just like everyone else. She wanted to hang out with friends, stay up late talking about boys, go for iced coffees, and midnight movie watching, and she found a way to do just that. I remember one night the Fall of 2019; Avenger's Endgame had just come out and Neeley and Avery wanted to go to a midnight showing. Avery had been dealing with seizures around that time, so I called her mom in the middle of the night for permission. Alysin thought we were crazy, but if I was willing to take the girls to a movie that ended at 3am, then more power to us. When her mom said yes, Avery jumped on Neeley's back and shouted,
"this is what high school is all about - let's go Miss Jill!" That girl had spunk and an energy like no other. The girls were hyped that night as the only seats we could find were on the front row next to a group of teenage boys. Those boys snickered a bit when two teenage girls and a mom walked in to watch Endgame....but the joke was on them. My girls were wired with sugar and diet coke and bounced with excitement the whole movie, while the boys had to be woken at the end of the movie by Avery popping them on the head saying "you missed it boys." Did I mention that girl lived for these normal experiences? Very few friends, Abbey and Neeley and a few others, knew Avery had so many challenges in life and Avery kept it that way on purpose. In fact, many of her close friends had no idea Avery had any medical issues, let alone one of the most rare, complicated cases in the world...and that was how she wanted it! Normalcy for kids in the medical world is a true gift - something they continually strive for.
Avery kept the pain of hospital stays, lengthy procedures, 24 EEGs, hundreds of x-rays, spleen scans, and blood draws to a limited few. Her family knew her physical and emotional struggles with RALD and a couple of close friends. I think Neeley and Avery became so close because they could both appreciate what the other had been through medically and when they were having a hospital-stay, tired-of-missing-school, sick-of-being-sick kind-of day, they had someone who understood. For Avery and Neeley, that connection was a lifeline during some very rocky roads. It is a friendship that changed Neeley's life - Avery was her "person" and Neeley was hers. That friendship was a true gift and I think the girls were okay with not being "normal" around each other.
But to most Avery Noel Ayan was a firecracker. She was a Durant cheerleader who loved the color blue, and was known to check out the tall, cute, baseball players. She was charismatic and enthusiastic about life and she couldn't wait to drive her red convertible. She loved dressing up crazy for Homecoming week and spent those nights dancing until her feet couldn't move any more. Avery had her "chicken nugget" crew and lunch time friends. She was an avid dancer and a friend to everyone around. She continues to be an angel to her friends. Avery's friends know she is still with them and watching over them, and is probably still checking out all the cute baseball boys. Her Cheer Squad created a special logo this year with Avery's initial and angel wings on the back of their spirit shirts.
To her family, she was Bubs, Bubby Wubby, or Squiggles. Avery was a devoted sister who absolutely adored her brother even when they annoyed each other. She was an amazing daughter who was best friends with her mom and her dad, well let's say she kept him on his toes. They had a unique bond as he helped her find that toughness and grit she needed to survive. In return, her family loved her right back. Squiggles was known to make up silly dances, crack everyone up with crazy jokes, and stuff her shirt with balloons to look more like Dolly Parton. She loved their family camping trips and weekends away four-wheeling or going to the beach. Let's just say with Avery in the family, there was never a dull moment! Avery also had a special bond with her grandma. Something special that comes when you go through the life Avery had been dealt. She loved her special weekends with Gramie or Nana. Avery will always be a special part of her family - she has was a loving niece and cousin and granddaughter to all those that loved her.
Alysin shared a special message at Avery's funeral. A message she wrote for her children in hopes they would live their lives to the fullest should anything ever happen to her. Sadly, the reverse happend as Avery's life was cut far too short, but Alysin hopes these words are are encouragement to others.
"10 things I wrote and left for my children to find and read when I passed away. I now want to share them with you all. I know Avery would have wanted to pass this on to everyone who was close to her.
1. Living like a failure is not an option and know that everything is possible through hard work and determination.
2. Love like you have never been hurt, everyone is different, do not punish a new love for a past loves transgressions. Your jaded heart may cause you to miss out on a wonderful encounter.
3. Family is the most important thing in life. Your brother and/or sister should be your best friend. Your father will always love you no matter what you do. I am always with you.
4. Travel and see the world before you get married and then travel it again and see it with new eyes.
5. Always try new things and if you don’t like it the first time try it again that applies to foods, places, things, and people.
6. Never accept no for an answer if it’s something that really matters to you. Don’t be afraid to speak up and have an opinion.
7. You are the best possible you that there ever will be, do not compare yourself to others. You can only measure your success by the standards which you live.
8. Be kind to the people that you meet you never know the circumstances or who they are. The stranger you meet today could be the most important person in your life tomorrow.
9. Have faith in yourself, in God, and in others - faith will carry you through when reason fails.
10.Be honest with others and with yourself. Trust every relationship worth having in your life.
After reading these….I was so amazed and proud to realize that Avery was already living just like this I didn’t have to leave her that note. Well except the marriage part her dad wouldn’t have allowed that for a LONG time! I hope everyone lives a little bit more by those words and thinks of Avery as we do so." - Alysin Ayan, June 25, 2020
As I spoke with Alysin this week, she shared, "I want her memory alive." Avery lived a life of struggle, pain, and uncertainty. But you would have never known that when you met her. There is a resiliency in children who live with chronic medical conditions. A resilience that is embedded in every cell of their body. Maybe living in hospitals and doctors' offices, these kids learn to truly appreciate life. Avery lived with that appreciation daily. Let's keep her memory alive and allow her to lead the way. Avery - look at how many lives you touched in 15 years and continue to do since then. You have already become that doctor - teaching others about your rare condition, but most importantly teaching others to live life with a smile, a dance, and a bit of a raspy voice.
Please remember this sweet girl's desire to make this world a better place for those who are undergoing medical treatment. Allow her to be your teacher and keep an open heart to the change around us.
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