Diane (Elise’s Aide)
A cute story with Elise happened while students were given an opportunity to eat their lunch in class while watching different animals live on a webcam. One of her classmates was singing and Elise started giggling, which made him continue. Her giggling was so infectious, we were all laughing! What a fun way to have a school lunch!
I love having her read to me. When she has mastered a story she is so confident and the words are like music to my ears. She works so hard and has accomplished so much.
Elise’s beautiful smile brightens a room and she has such an open and kind heart.
Do not take “they won’t” or “they can’t” as an answer. You never know until you try. Things change every day and there are answers around the corner. What doesn’t work for one person might work for another. You have to keep getting up and keep fighting.
The mission and work of Elise’s corner means that this small but mighty group is insisting to be heard and helped.
I am her aide in school. I am her safe zone when she has fears, offer encouragement when she needs it, reign her in when she’s sassy, and a cheerleader when she accomplishes another milestone.
JENNIFER BONSKY (ELISE’S MOM)
I can tell a million funny or interesting stories about my sweet girl … that’s part of being a mom I suppose. Part of what makes Elise “Elise” though are her funny little nuances. For example, she’s a hoarder! In the most intense way possible! When I go into her closet, I always know that I’m sure to find some type of treasure that she seems to think is important. It could be old birthday cards, random drawings of her name (like, 500-page notebooks with just her name written individually on every single page), old balloons, my jewelry, used stickers. You name it, she stashes it.
It goes beyond her closet, too. She’s the official remote control handler for all of the TVs in the house—she even sleeps with them tucked under her little arms.
Going to school has become an issues of sorts as well. She insists on always packing special surprises for her schoolmates and teachers. Her favorite stash items are her beloved One Eye (her Beanie Baby cat that’s missing an eye and is carried around on a leash) as well as Neigh Neigh (her favorite stuffed animal horse). The list goes on. And on. And on.
Cuddling. Name the day, night, time … whenever, wherever. She is the most cuddly, lovable creature and it makes my heart explode with happiness and pure love to be able to hold my baby girl in my arms and rock her and sing to her. There’s nothing better.
She is my world. My entire life. Everything that anyone could ever want or dream in life, she’s it for me. I would move mountains to guarantee just one more day/week/year/you name it with her. Some people travel the world to find their meaning in life or check off those bucket list items. All I have to look into her beautiful blue eyes and I know that I have more than I could ever wish for and deserve in this lifetime. I’d be lost without her.
Feel the pain. Don’t be afraid to show your vulnerability. Surround yourself with the ones that you love and allow them to take care of you. Feel bad for yourself. But then, pick yourself back up. Find someone to talk to that can help you move forward in a positive way. Understand that there will be victories and setbacks, but there is so much hope in our community right now. Focus on moving forward. Dwelling on the past won’t help you in the future. Love everyone the way our kiddos love—purely and hold nothing back. There’s no guarantee for anyone in this life, so make the most of today and hope and pray for a better tomorrow. Don’t be too hard on yourself, you are doing GREAT.
It represents the very reason why I’ve been put here on earth. I want to do everything and anything possible to help every person affected by AxD.
She’s my sunshine.
CHRIS BONSKY (ELISE’S DAD)
Elise loves animals – stuffed and real. “One Eye” is her stuffed kitty, and she has taken care of her for over four years. She can spot and count an animal from a mile away when we are driving or walking through our neighborhood. Her real cat, Blue, makes her happy every day, as does her real dog, Cubby.
We always love to go and grab some pizza, which is one of her favorite foods.
As her Dad, I am always amazed at what she is able to do, to express, and what pushes her every day. I never thought, after her diagnosis and her prognosis, that she would ever be doing what she is doing today. She is making friends, loving the time she spends learning at school, swimming, and cruising around on her scooter.
Keep fighting. Period.
As one of the founders of Elise’s Corner, our mission means everything to our daughter’s future, and the futures of so many children. Our success has helped contribute to the search for treatments and a cure for all these children and families impacted by this disease.
As her father, I would do anything for my amazing and talented little girl.
SUE (ELISE’S EQUINE THERAPIST)
My funniest moments with Elise took place when she was working out in our fitness program. She loved to play Horse-Horse-Pony (our version of Duck-Duck-Goose) and include all of the dogs. She would tap their heads and say “pony” or “horse.” They would never run, but she still thought it was funny and would just laugh.
For me it would be to help her here at the farm with her horseback riding.
Her smile and positive energy.
Elise’s family gives her so many wonderful opportunities. I would encourage other families to do the same, to not let AxD control their lives. Instead, enjoy the moment and allow their child to experience as many things as possible.
I have a son with cystic fibrosis, so I really understand how important it to advocate for your child. Diseases like AxD and CF are not common, so raising awareness is so important. Elise’s Corner is a fabulous way to education others about the disease, help other families who might need support, and raise funds for research in the fight against AxD.
My role is to teach her about horses and riding. Using the horse as a tool, Elise gets to work on her core strength, muscle tone, communication skills, play games, enjoy nature, and make friends.
JUDY (ELISE’S EQUINE THERAPIST)
Elise began riding at our horse program at a mere 3 years old. During her ride, she would become so excited … if her horse would stop to go potty! She wanted to be sure we would let her be the one to pick up the pile and would ask until we assured her that she could. First thing after her lesson, she would get the muck cart with manure fork and push it through the arena to happily pick up the poop pile, smiling all the way!
An exercise we do on horseback. We sing “Twinkle, Twinkle Little Star” while extending our arms above our heads and swinging them to the right and left, as we’re twinkling our fingers making the motions of twinkling stars as we sing.
When Elise walks into the barn, her presence lights up my day. Her gentle soul, her precious smile, her joyful giggles, her sisterly love, and her hugs that warm my heart are beyond special to me.
Be strong and courageous. Turn your fear into faith. Seek guidance and support from family and friends.
An organization founded by love, faith, and hope. A way to spread awareness. A way to provide for and to push for more and more research. Most of all – its ultimate goal – to find a cure!
My hope would be that I am providing a rewarding experience for Elise as she bonds with the horses, builds her confidence, enhances self-esteem, and continually learns new skills. Engaging in fun activities while riding aims to help her balance, coordination, and strength.
ELISE’S GRANDMA AND GRANDPA BONSKY ()
Elise is infatuated with tiny toys and things with little pieces. She has an amazing ability to put puzzles together without even looking at the picture to be created. She loves to collect, sort, and put things into purses, containers, backpacks, or bags. She cherishes all her collections and remembers all the names of the characters, where they’re from, and what they do. She is very observant and recognizes if something is amiss, if someone has been in her stuff! Even though she has many storage places, she still loves to carry at least 5 or 6 things in her arms. She also loves the bouncy house downstairs and the challenge of ping pong. It is adorable to watch how she engages with not only her things, but little Emma.
Elise is the most angelic child, so everything we do—from playing games, singing songs, baking cookies, or walking the dogs—is a delight. My absolute favorite would be the sleepovers. Nothing is more precious than snuggles, prayers, hugs, and kisses.
Elise is our first granddaughter, so truthfully she is one of the most precious blessings in our lives. Everything from the twinkle in her dreamy blue eyes, her delightful smile, her infectious laugh, and her undeniable courage all attribute to her angelic personality.
We would encourage AxD families to be as strong and courageous as our brave Elise. Never give up HOPE. Believe in miracles and have faith in God’s plan.
The mission and work of Elise’s Corner gives us faith and hope that Elise will be among the “Miracle Children.” Her unique qualities leave an impression with everyone she meets. She has endured so many things in her young life. Her future is bright thanks to all of her family and the supporters of Elise’s Corner. Doctors and researchers continue to work together to find a treatment or, better yet, a cure for AxD. Elise’s Corner provides hope and support to all families struggling with AxD.
As Elise’s grandparents, of course our role is to spoil her! We will always be there to encourage her, provide support, listen, and, most importantly, provide our endless love.
ELISE’S GRANDMA AND GRANDPA PEARSON (MIMI AND PAPA)
When we think of Elise, we see pure innocence, love, and determination. We can all learn from her. She is our little angel here on Earth. God has blessed us with her.
FROM PAPA: Following a family dinner out, I gave Elise and Emmersyn each $5 to tip the valet driver. Emmersyn handed the money over. Elise did not! She stuffed the money into her purse and walked right by the valet man! The money is still sitting somewhere in Elise’s closet.
I have to say spending time and cuddling with her is our favorite. We love when they come to Florida and we can swim, play, and just have fun together.
Elise is a true inspiration. She gives her all in all she does. Elise doesn’t give up. Emmersyn, Elise’s sister, keeps her moving forward; she won’t let Elise stop. Together, these two are the dynamic duo. They truly feed off each other. Elise and Emmersyn have such a strong and special relationship. You can’t have one without the other.
Never stop believing. And there is power in prayer.
Everything! How could it not—Elise and Emmersyn are our world. We have and will continue to fight and raise money for a cure.
We are her Mimi and Papa. We love her and Emmersyn, as we say, “To the Moon and Back!” We will always stand by Elise on both good and bad days. Elise and Emmersyn will always have a very special place in our hearts and lives.
MONTARA (ELISE’S NANNY)
Of all of the amazing and fun times that we have together, my absolute favorite will always be our very frequent dance parties in the kitchen, listening to John Mayer, as we battle to see who has the best dance moves.
One of the most magical things about Elise is her ability to turn anything into a great time. From Target runs to rainy days in the house, she makes every day an incredible adventure.
Her heart. Elise is the sweetest, strongest, and most loving child I’ve ever been blessed to meet. Being around her gives you no choice but to smile and realize how beautiful life really is. She’s an incredible little trouper, and watching her persevere and push to be the best that she can be is an inspiration to me each and every day.
The best advice that I could give a family would be to focus on the present. The uncertainty of AxD and the future can be absolutely terrifying, but these amazing children deserve to live their best lives every single day. Cherish the moments and pray for the future, but don’t let what “could be” take away from your time with your little one.
The mission of Elise’s Corner means the world to me. Elise has become such a huge part of my life and the love I have for her is indescribable. I just can’t imagine life without her in it. The work that Elise’s Corner is doing to help fight for that amazing future for Elise and the other kiddos with AxD gives me such hope.
Although I am supposed to be a caregiver for Elise, I consider her more as family. I’m blessed with the best job on the planet and can’t believe that I’m lucky enough to be a part of her life.
STEPHIE (ELISE’S OCCUPATIONAL THERAPIST)
Elise and I spend time together at JAFS Therapy In Motion horse barn. She loves it there! But, believe it or not, her very favorite thing to do at the barn is cleaning up the horse poop! Eventually, we even started working the activity into her therapy sessions as upper extremity and core strengthening.
One of my favorite activities with Elise is yoga. She even does yoga on the horse! I’m grateful for the joy she brings me and that she allows me to connect so many of my passions: working with amazing children, doing yoga, and being around horses.
Her ability to connect with everyone around her. When she arrives at the horse barn, the whole energy shifts. Not only are all the workers happy to see her, but the horses, cats, and sometimes even dogs rump around to visit with her. She brings ever-flowing joy.
There is hope. Have faith. Love above all.
Professionally, I could be described as Elise’s occupational therapist at the horse barn. But truly, I’m just another one of the people who has been lucky enough to have been changed by the Bonsky/Pearson family.
APRIL (ELISE’S PARTY PLANNER)
I loved seeing both Elise and Emmersyn meet my daughter for the first time. They were both old enough to comprehend and understand what a baby is, and they had such love for her immediately.
I love to see Elise in her natural environment. Most interactions I have had are at birthday parties and Halloween. I enjoy when my kids get a chance to play with Elise and Emmersyn. In those moments, there is nothing wrong and you see kids just being kids, and there is nothing more innocent and joyful than that.
Elise is special to me because when you look at her you see the innocence, joy, and the beauty of a child and life in general. She is constant a reminder of strength and love. Her outlook on life inspires, motivates, and is a reminder of how we all need to remember what is truly important in life, be thankful for all things, and to cherish each moment with friends and family. Elise’s face is very angelic to me and I see a very special girl that has done more for others than she will ever know. I admire her determination.
Feel every emotion, but chose to fight. There is hope. I remember talking to Jenny just as she got the phone call from the doctor. In that moment, Jenny was gone. I couldn’t reach her, I didn’t know what happened. When I found out the diagnosis, I did what everyone does and shouldn’t do and that was google “AxD.” When I did this, I just cried. Then when Jenny was ready to talk, she was the strongest person I had ever seen. I remember her telling me she had two options: to sit back and let AxD take over … or she could fight. And boy, has she fought. There is nothing that love and hope can’t conquer. Bad days, weeks, and months will occur, but choose hope, choose to fight. There is an entire network and community that will welcome you with open arms, already in your corner, fighting for your child.
Through this mission, I am reminded that hope and faith can beat all expectations and allow miracles to happen. This organization has provided the opportunity to grant miracles to kids, and is a constant reminder that miracles can and do happen when you have faith and keep hope.
My role in Elise’s life is to be a supporter of both her and her family. Jenny is a good friend of mine and I want to always be there for her and Elise.
MIKE (ELISE’S PARTY PLANNER)
I’ll go all the way back to Sept. 1, 2011, the day Elise was born. It began like any visit to the hospital to meet the new baby, but the ending was one-of-a-kind. After visiting with Jenny and holding Elise for a bit, it was feeding time so I stepped out into the hallway to wait. About fifteen minutes later, alarms began to sound, lights were flashing and I was aggressively escorted to the exit under the protocol of a “code red.” The unconfirmed theory is that a strange man loitering in the maternity ward outside Elise’s room may have been the cause of said drill, but I’m not so sure.
Favorite memory? It has to be the Elise’s Corner Gala in 2015. Our first event. So much emotion, so much chaos, but so much support! As the evening went on and I got more and more comfortable that we pulled it off and success was felt by all involved, my attention turned toward Elise. I remember standing on the side of the ballroom watching her take it all in … the auction, the video, the songs. The smile told the story. THIS is why we were here. And that feeling has not wavered for a single moment since that night!
Nothing warms my heart more than watching our families play together. When you put Elise and Emmersyn with my three princesses, Allyssa (10), Addalyn (7), and Aubree (5), there is no shortage of love, laughter … and noise! Elise doesn’t hesitate to jump right into the middle of the chaos and let the group know who is in charge, and trust me when I say that her larger-than-life personality is not likely to meet much resistance.
This is a tough one for me; it’s a toss-up between her strength and her grace. The strength with which she battles every day to grow, and the grace with which she simply takes everything in stride, with an attitude that each of us could take a lesson from. Whichever of these is on display, and it’s usually both of them, it’s a privilege just to be in her presence!
There is hope! In 2015, a small group of people with zero knowledge and experience decided to fight to make a difference. What started as much more emotion than execution has grown into a nationally recognized name in the fight against AxD. Dedication has grown into experience and with unwavering support from corporations, communities, and families, we’ve built something incredible. Together, we have made a difference and you can, too!
More than any other experience in my life to this point, Elise’s Corner has taught me perspective. Not only on how I live and approach each day, but more importantly how I respond to difficulty. I heard someone say recently, “It’s a gift to exist, and with existence comes suffering.” Before Elise’s Corner, my perspective would not have taken great meaning from those words. Now, having had the privilege to lead several teams through three gala events for this princess, and the misfortune of some suffering in my own life, I have emerged more grounded and grateful than ever before. As a result, I am a better husband, father, friend, and teammate, and I have this beautiful angel, Elise, to thank for all of that!
I’m honored to be her guardian angel, one of many, I would suspect. Simply put, my role is advocacy and the hats are many. As a leader in Elise’s Corner, I am proud to inform, recruit, fund-raise, and organize. As a part of her “family,” I am delighted to be present to support whatever she and her parents need, and I always will be!
MINDY (ELISE’S PHYSICAL THERAPIST)
If I were to pick one, it would be a time we were working on climbing a rock wall. Some of it was very difficult to do, but Elise has such determination. It didn’t matter how many times she had to step down to take a break, she would immediately ask to start again to try to get the whole way down the wall. She has wonderful determination.
The thing we liked to do the most were activities related to volleyball. I worked one-on-one with Elis and she did an outstanding job. I think she was impressed, too, with how well she did.
Her glowing smile and her willingness to always try. She rarely tells me no when attempting a new activity.
Always treat your child like an individual. You never know your child’s true potential until you let them try. Elise has been a remarkable kiddo in this respect. I do have to give her parents credit, in that they give her as many opportunities as possible. Never let a diagnosis determine a child’s ability.
I’m particularly interested in the educational aspects of the mission. I believe greater education about AxD is extremely beneficial, not only to parents and patients, but to the extended circle of loved ones who might not know what to do or how to help. By raising awareness, Elise’s Corner is a beacon, guiding, informing, and most of all encouraging hope.
I feel like my role is to be positive and encourage her to do as much as she is able to do. I’m essentially a grown-up cheerleader, helping to give her the encouragement when needed.
MR. WHITAKER (ELISE’S PRINCIPAL)
I remember when her mother stood in the hallway and heard her read, maybe for the first time. Tears of joy from mom, and Elise was very proud of herself.
I like to tease her about little things to encourage her to talk with me. When she giggles and tells me “You’re silly!”—it is awesome!
Hearing her laughter can make an awful day feel like the best one ever.
Never surrender. Build on the strengths that your child has and find a loving team to challenge and nurture their growth. Find the gifts in your child’s growth and always celebrate them. Have faith. From small things, big things come!
It provides opportunities and hope for other children and families in the same circumstance.
I am just a part of a great school team that is learning from this little girl every day. Elise has a spirit that is indomitable and I am inspired by her resilience and courage.
EMMERSYN (ELISE’S SISTER)
When Elise puts on makeup, she puts it all over her body. Also, she snorts like a little pig.
Play with her. Calico Critters, hide-and-seek, chalk, anything fun for us to do together. And yes, Elise is bossy.
Because she’s funny and silly and she’s sassy and she’s pretty and I love her freckles. And I love her most because we’re sisters. She’s also a really good friend and she makes me laugh. I like how she’s curious.
I hope you get better. We love you and would let you pet our dog, Cubby. And we hope you don’t have to go to the hospital a lot.
I help Elise feel better by loving her and making her laugh.
JULIANNE (ELISE’S SPEECH THERAPIST)
On St. Patrick’s Day, the “leprechaun” visited our speech room, leaving behind a scavenger hunt for the kids. Elise was convinced the leprechaun was still in the room and proceeded to repeatedly yell out his name, hoping he’d appear. Seeing typically calm, easy-going Elise fill the room with squeals and laughter was truly special. Even Mrs. Dutton heard Elise from down the hall and decide to come join the fun. It’s easy to say that Elise brightens all our spirits!
I love working with Elise on her speech sounds. This is one of her more challenging areas and she always attacks it with a positive attitude. Needless to say, she always earns her reinforcer of a board game at the conclusion of speech therapy. She has a competitive spirit with games and will even throw in a little trash-talk—“I’m going to beat you!”
Elise has the spirit of a fighter; she doesn’t give up! But beyond that, Elise exudes kindness toward everyone she meets. She encourages her peers and praises their successes. She is always the first person to share with others. There are times when I look at Elise and see the grace and poise of an adult. In many ways, she is mature beyond her years.
Your child is more than a diagnosis. Our society is set up in such a way that we automatically consider what we can’t do, but stop to see the beauty in what your child CAN do. Your child has amazing strengths and talents that will inspire those he or she meets. Their diagnosis is a small part of your child’s large imprint on this world.
Not only is Elise’s Corner a message of hope, it is also a catalyst for change. It is amazing to see the work done to not just raise awareness of AxD, but also provide resources for families and support for research efforts.
I am a part of Elise’s team! And it truly is HER team. We rally behind Elise’s can-do attitude and positive spirit. I see my role as supporting and highlighting Elise’s many strengths while encouraging her to continue to develop her areas of need.
ANNA AND BEN (ELISE’S FRIENDS)
Last year I got to ride ponies in Elise’s yard for her birthday and also at her horse barn. I spend a lot of time swimming with Elise in the summer. I love how excited Elise gets about seeing doggies, including my dog, Callie. Elise looks for me in the gym every day so we can get on the bus together.
I love to swim with Elise and ride scooters in our driveways. One of my favorite things to do is fish in the backyard. We love to play hide-and-seek, and sometimes we just watch TV and relax together.
She never gives up and she is always so brave. Whenever Elise feels sick, she always gets back up and feels better.
Never give up. My neighbor [Elise] has AxD and she never gives up. She is always having fun and always learning.
They raise money to fight AxD and that is important to me because of my friend Elise.
I am Elise’s best friend, neighbor, bus buddy, and like family to Elise.
Elise is always joyful. If she sees a goose, a bird, or when she rides her scooter, or the tricycle that I gave her.
I like to ride scooters and bikes with Elise in the driveway. Sometimes we play soccer or other sports and that is always fun.
Elise has a great sense of humor. Her perseverance makes her special.
I would tell them to never give up. There are more good days than bad days and Elise has a lot of joy in her life.
They raise money to help fight AxD and support families. They are trying to save lives and that is important.
I am her neighbor and I like to help her out, support her, and play with her.
SUSAN SCHOOL (ELISE’S KINDERGARTEN TEACHER)
I love to bake cookies with Elise and her sister, Emmersyn!
Elise is special because she brightens any room that she enters. She is completely pure and innocent, and unassuming and endearing. To know her is to love her.
Celebrate every day that you are fighting this horrible disease. Every day is a gift from God. Focus on the beauty of your child. Find a support team. Pray for your child’s team and for those working toward a treatment and a cure.
The mission of Elise’s Corner is so inspiring and heartwarming. It is truly amazing how vast this network is. Elise is so easy to love. We all feel equally honored to be a part of her journey and to be in her corner.
God placed Elise in my life and in my classroom. My role was first to be her teacher. Now it’s to be her cheerleader, her admirer, her supporter, and her prayer warrior!
MEREDITH (ELISE’S INTERVENTION SPECIALIST)
The first time I heard her yell, I mean really yell. She’s quiet at school. I had a cookie-baking party one July, at my house, and another student gave my dogs apples. Elise thought it was hilarious that the dogs were running around with apples in their mouths, so she ran into the center of a huge group of people and yelled, “The dogs… have… APPLES!” We had been encouraging her to speak in complete sentences and it was awesome to see her so excited, but at the same time using her words, and wildly waving her arms. Casual, comfortable, at-home Elise is a pretty fun kid.
Everything, but mostly a girls day with nails, and hair and makeup, and dancing, and movies and popcorn, and snuggling. And maybe animals.
The knowledge and science and diagnosis surrounding Elise is so HEAVY—but you would never know it. The air around her is light and bubbly. She’s not a kid with a burden, even though she’s a kid with a burden, you know? The world is magic to her. Her friends are hilarious. She loves school. She loves her teachers. She loves everything. She loves to giggle. She hoards my teacher markers in her desk because she loves those, too. She’s obsessed with little Lego people right now. The concept of Alexander disease is disheartening, but when you see her, when you’re in her presence, you just can’t feel it anymore. She doesn’t let you.
You have a lot of precious days. Don’t count them. Play. Love. It will be colorful. But at the same time, it will never be enough.
Not only is Elise enjoying the life she’s been blessed with, but Elise’s Corner helps families who feel helpless, isolated, and under-funded. It creates a family across the miles who likely feel so relieved to network with families with the same diagnosis. It funds research that will literally save lives, even if Elise does not see the cure (I pray that she does). That’s a damn miracle of a gift right there.
Without a doubt, I don’t even have to think about it, I am the luckiest. There are probably more than a million intervention specialists in the U.S. and guess who gets her … me. Nobody else. So many people have asked, “Wow, how do you do it, don’t you get sad?” And I honestly never have. When I see Elise’s parents struggle, I’m sad. When she’s sick, I’m sad. But my role is something I could never be sad about. No one understands my blessing. God put Elise with me, or me with Elise, and it’s so completely right and can’t find any “wrongness” in it.
MRS. BURTOFT (1st GRADE TEACHER)
What is a funny or interesting story or memory you have about Elise?
I loved how Elise encouraged her classmates, but also kept them in line, haha! Elise gently (but with authority, lol!) would tell classmates to stay in line, remind them about housekeeping items (turn in homework, put crayons away). She always said it with the sweetest little voice you could imagine, which made it even funnier and cuter!
What is something you like to do with her?
I love reading with Elise. I’ve had the privilege of reading amazing books to her during read aloud time at the carpet, and I’ve been lucky enough to listen to Elise read to me! I love the way she uses her picture clues on the page to help her figure out unknown words, and I love the adorable way she enunciates the words. Sharing a book with Elise is awesome.
What makes Elise special to you?
Elise always has a smile on her face. She has faced more in 8 years of life than most of us ever will, and yet she remains a happy, carefree, loving child. She lives in the moment. I admire the fact that Elise is able to leave the past behind and not become consumed with worry about things to come. She is fully present in each moment. We can all learn a lesson from her about how to live life to the fullest.
What are some words of encouragement you would offer to a family who just found out their child has AXD?
I don’t know that I can speak to this, because the one thing I DO know is that I DON’T know what and AXD diagnosis would be like for a parent. I can try to imagine, but we just can’t ever truly know what we haven’t experienced. However, I guess I would encourage the parents that they do not have to be strong. That this disease isn’t fair and is nobody’s fault. That it’s okay for them to crumble for a bit. I would tell them that they will get their footing again, but there is no timetable for when that needs to be. They don’t have to have the answers, they can just go on loving their child and surround themselves with others that do have answers. I would encourage them that it’s okay to grieve the loss of the future they envisioned for their child and themselves. I would tell them that they aren’t alone even though it may feel that way.
What does the mission and work of Elise’s Corner mean to you?
The mission and work of Elise’s Corner is so important because there is just not enough known about Alexander’s Disease. When I tried to research the disease to prepare for Elise entering my 1stgrade classroom there was very little information available. It is so valuable that Elise’s Corner is raising awareness about this disease and funding research to help find a cure.
How would you describe your role in Elise’s life?
I had the honor of being Elise’s 1stgrade general education teacher! It was a joy to teach her, learn from her, and watch her grow. She will always hold a special place in my heart.
Jim Nevels (Elise’s Hero )
What is a funny or interesting story or memory that you have about Elise?
My fondest and most memorable time with Elise was when I first met her. Her parents and grandparents came to visit Philadelphia for an appointment. We then went to dinner at what was one of our favorite places in Philadelphia, a restaurant called Smith & Wollensky. There, Elise and I talked a bit, and I asked her what she liked most about dinner. She said, “dessert”. Therefore, we ordered a huge, and I mean HUGE, piece of carrot cake for Elise. We memorialized that moment with a picture of her sitting in my lap with that huge piece of cake, which we both enjoyed.
What is something you like to do with her?
What makes Elise special to you?
Her innocence, acceptance of everyone, and her childlike faithfulness.
What are some words of encouragement you would offer to a family who just found out their child has AxD?
The words are straight forward and simple. Be faithful. Believe. And if at all possible, go see Dr. Amy at the Children’s Hospital of Philadelphia.
What does the mission and work of Elise’s Corner mean to you?
I affirmatively believe that AxD will be beaten. Elise’s Corner means the eradication of a disease from the face of the earth, and for all times. It is Elise’s courage and inspiration that fuels that belief in a cure.
How would you describe your role in Elise’s life?
I am Elise’s friend, believer, faithful guardian and person that she can rely on at any time.