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AICARDI SYNDROME DAY? LET'S MAKE IT HAPPEN!
Hello world!
I'm, Alyssa Jordyn
There's much to see here! So, take your time, look around, and learn all there is to know about us. If we meet, don’t worry, it’s okay to ask my Mama or Papa about me. I’m super proud of them for having the courage to talk about my medical condition. I hope you enjoy our site and tell your friends about us.
About Us
A Worthy Cause
A Worthy Cause
A Worthy Cause
Our MISSION is to spread awareness about AICARDI SYNDROME, attract active interest in the medical community and expand genetic research around AICARDI SYNDROME- with hopes of determining the cause.
Our goal is to identify, recognize and offer support to families- who face daily CHALLENGES brought by AICARDI SYNDROME and other specia
Our MISSION is to spread awareness about AICARDI SYNDROME, attract active interest in the medical community and expand genetic research around AICARDI SYNDROME- with hopes of determining the cause.
Our goal is to identify, recognize and offer support to families- who face daily CHALLENGES brought by AICARDI SYNDROME and other special needs medical seizure disorders- to help them stay #FAMILYSTRONG
My Story
A Worthy Cause
A Worthy Cause
I’m a twin! I have cousins that are triplets, too! My twin sister and all of my cousins have shown me lots of love and support as I face the daily challenges of living with Aicardi Syndrome - a rare condition that I was born with that mostly happens in females.
I was born in the summer of 2014, with my rockstar older Sister, Kylee Oliv
I’m a twin! I have cousins that are triplets, too! My twin sister and all of my cousins have shown me lots of love and support as I face the daily challenges of living with Aicardi Syndrome - a rare condition that I was born with that mostly happens in females.
I was born in the summer of 2014, with my rockstar older Sister, Kylee Olivia; she’s my hero. I love her so much, and I’m so happy she's with me everyday throughout my journey.
I’m different from most kids. Most kids grow up to become independent. Right now, I need my entire team to help me live my best life. I’m super blessed to have such amazing people to help me thrive and reach my goals.
Today, I’m 6 years old, and believe it or not…case studies claim the average life of a child with Aicardi Syndrome spans from 4 - 15 years of age. So, as you can see, I have beaten and will beat all odds!
I’m healthy today, but I’m challenged daily with uncontrolled seizures. I can get 1 to 10 seizures per day, lasting anywhere from 1 minute - up to 10 minutes sometimes…and, that’s while on medication!
My Neurologist has worked with me to decrease my seizures, throughout my six year journey, in hopes that eventually they will no longer hinder my development. I hope to reach this goal, so that I can improve with increased muscle tone and strength…enabling me to hold up my head, crawl, sit, stand, and walk with neither the help of my wheelchair nor my stander!
I hope to develop more like my sister, as I would love to speak with her! I am non-verbal. I understand more than I can say…but trust me, I’m a great listener! With the help of my Speech Therapist, nurses, and family whom all take great care of me, I am able to communicate “yes” and “no” by nodding my head, raising my eyebrows, and giving a thumbs up!
I have quite a few other goals to achieve and with the help of my team, I know I have a chance! I’m currently fed through a G-Tube, since I am unable to eat independently at the moment, and I’m on a special Ketogenic (no sugar) diet, formulated by my dietician. I am also legally blind, but with the help of my Vision Therapist, I’ll improve and see more clearly. Oh and another mention…my breathing requires help; so, I’m grateful to my Delivery Carrier who brings me my oxygen tanks, every Friday.
I can go on and on about all the things I can’t do, but I try to focus on the things I can do. I can live my best life by educating others and raising awareness about Aicardi Syndrome. I can live my best life because of my family, my doctors, my nurses, my medical equipment and supplies team, my insurance, and everyone else involved in my scope of care. So, thank you! Thank you, for helping me! Most importantly, thank you to my Mama for making sure I have access to all the help I can possibly get and ensuring consistency and quality in my care. You are my #1 advocate for quality care! I hear my parents say, “It takes a village”…and it really does!
I’m super proud of myself for fighting everyday, but I couldn’t do it without everyone, and without you! We can all make a difference.
Help me and my family on our journey to find what causes the gene mutation for Aicardi Syndrome.
Help me and others like me to stay #ALYSSASTRONG!
With Much Love,
Alyssa
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A Worthy Cause
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Alyssa Strong Foundation, Inc.
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