Spina Bifida Association of Alabama

Today is the last day to RSVP!!!

Christmas is almost here! It's time for our annual Christmas Party! To RSVP, email [email protected] with the names and ages of all those attending!

10 days left to RSVP! Can't wait to see everyone there!

Christmas is almost here! It's time for our annual Christmas Party! To RSVP, email [email protected] with the names and ages of all those attending!

Just because Awareness Month is over doesn't mean we can't post one more amazing story!

Hi,
My name is Jaylen Turner.

I love to tell my story every chance I get.

I have had spina bifida since birth.
My parents found out that I had it during
my mother’s eighth month of pregnancy.

The doctors gave them grim diagnoses such
as I wouldn’t be able to walk,
I would just be a vegetable,
and I wouldn’t know anyone by name.

Well, I definitely defied those odds.
I can walk some distances,
know my parents and everyone else by name,
and graduated second in my high school class.

I’m now accomplishing my next goal of being a
hit singer/songwriter/producer.
I’m getting ready to record my very first album
next year!

Spina bifida isn’t a death sentence.

Of course, I have my bad days,
but with my faith in God,
and the love and support of my true
family and friends,
I’m ready to face any problems that it brings head on!

National reached out to us about this study designed for adults 18+ with Spina Bifida. Participants who complete the entire study will receive $200! Click the link if you'd like to participate:

https://redcap.uits.iu.edu/surveys/?s=HDAM33RNXXDWCL4W&fbclid=IwAR35PmQcg5Hb6KseWM4Uk1WuGlonZc2QlLm_L6_trk062NVAbmvwBxdbUQU

redcap.uits.iu.edu

💛✨Some people never meet their Hero, I gave Birth to Mine🎗✨💛 My Sweet Khayden is only four years of age, but he has knocked down so many obstacles.

October is Spina Bifida Awareness month, 31 days of celebrating not only my Spina Bifida Warrior but all the warriors out there💛💛

Our journey started with an ultrasound at 31 weeks of pregnancy with a specialist, who discovered Khayden had Spina Bifida. Since that day we have been on this amazing journey, a journey filled with many exits, new routes, some road blocks, and watching my warrior never give up, and also showing us his unbelievable amount of strength💪🏽

Khayden has the worst form myelomeningocele L4-L5. He has no feelings from his ankles down. He also has hydrocephalus and has a VA shunt. He also suffers from neurogenic bladder💛

Despite having 38 surgeries to date, weekly therapy sessions and ongoing medical appointments he rolls with the punches and always comes out on the other side smiling. He is an absolute ROCK STAR and brings so much JOY to friends and family.
✨ 🎗

💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛💛
🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗

Thank you to Khayden's mom, April, for submitting this awesome story!

Bowl-a-Thon day!!! Huge thank you to all of our wonderful sponsors that helped make this happen!!!

It's World Spina Bifida Day! Wear teal today and tag us in your posts!

My Spina Bifida Story - Peter Askham

After Peter got diagnosed at our anatomy ultrasound, I remember telling my husband “I can’t be a mom to a child with spina bifida. I’m not chill or patient or nice!” And while I’m still not chill or patient, in the 8 years since, I’ve learned that there are a million ways to be a good mom to my boy. Being his mother is truly a gift.

Peter has always had a charismatic, determined spirit. His laughter and grit have brought him through every challenge he’s faced. Whether it’s ice skating in the park or traveling around the nation’s capital, he always finds a way! As a young child, Peter’s life seemed to revolve around therapies and doctor appointments. He worked hard to learn to use a walker, then graduated to crutches, later graduating therapy altogether. Today, Peter’s appointments are few and far between. He walks with AFOs and uses his wheelchair for longer distances. He recently joined the wheelchair basketball team at Lakeshore, which has reignited his love of all things basketball. Peter also loves Star Wars, Lego, and learning new things. He loves to study history and go on adventures. And most of all, he absolutely loves people- loves their jokes and hearing about their favorite things. Everyone he meets is his best friend, and I hope that never changes. We love you, Peter!

Thank you to Peter's Mom, Arianne, for submitting this amazing story!

Christmas is almost here! It's time for our annual Christmas Party! To RSVP, email [email protected] with the names and ages of all those attending!

My Spina Bifida Story - Jace Clifton

Jace was diagnosed with Spina Bifida in utero at 17weeks. During an ultrasound, they noticed his skull was shaped like a lemon, and thus began our journey. We were then scheduled for a Level 2 ultrasound at Maternal Fetal Medicine and there they confirmed his diagnosis. Immediatly after confirmation they told us they recommended abortion because Jace would have no quality of life. We were shocked at how easy it was for them to offer to abort our child, and immediately shot them down. We wanted this baby and he was already loved, no matter what our future may hold. We decided to continue OB visits here but do all SB visits and such at Vanderbilt in Nashville, TN. We went for testing and were candidates for fetal surgery but ended up backing out due to Jaces lesion being 2x the size of the average SB opening. It was far to dangerous and we weren't comfortable risking his life or possibly causing other disabilities from that procedure. We opted for post natal closure at 1 day old instead. Further in the pregnancy he developed hydrocephalus and had chiari 2 as well. The hydrocephalus stabilized enough in utero but he would end up having brain surgery for an ETV-CPC at 1 month old.
Since that surgery he has only had to have orchidopexy and achilles tendon release surgery. Jace has handled all of his surgeries like a pro and is one tough guy. He is paraplegic and mainly uses a wheelchair, but also stands in HKAFOs and uses a walker for small distances. He goes yearly to see his Specialists at Spina Bifida Clinic and goes biweekly for PT at Childrens. We always hear about how strong he is, how social he is, how happy he is, and everyone just seems to love and enjoy being around Jace. He literally lights up a room when he enters it. He is a super social 4 year old who has defied the odds stacked against him. I wish the MFMs could just see how amazing his quality of life is and quit telling the SB parents to abort these sweet innocent AMAZING babies. Jace has completed our family and is the most amazing blessing and I thank God for sending him to us and letting us know such joy and happiness.

Thank you to Sharee Clifton for sending in this wonderful story! If you would like to submit a story, email [email protected] with the subject "My Spina Bifida Story" and be sure to include your best picture!

This weekend is the deadline to register for this event! Come join the fun!

Registration for this event is now open! Lanes will be limited so please register early. If we have enough teams sign on, we will have two bowling rotations, which is another reason we need to have early registration to gauge interest. There is no fee to register, but teams are asked to fund-raise a minimum of $150 per 5-member bowling team. There will be medals for the top-scoring team, a medal for the top-scoring individual, and a plaque and gift will be given to the top two event donors. If you have any questions, please email [email protected] or call 256-919-7988 for more information. To register, visit https://secure.frontstream.com/2023gadsdenbowlathon

or you can email your five team member names and shirt sizes to the above email. We hope to see you there!!

My Spina Bifida Story - Ryker Parette

At 21 months old, besides the fact that his legs don’t work, Ryker is the typical {almost} 2 year old! He’s a wild child, so silly, smart, and oh so much fun! He is a huge social butterfly and will stop his wheelchair to say ‘hi’ to everyone he sees. His absolute favorite things are riding the “wheeler” with his Matt Matt, calling the deer, and Oatmeal Crème Pies!

I remember specifically during the NICU time, the Spina Bifida coordinator for the hospital at the time told us, “Ultimately nobody can tell you what your child can or will do. Your child will be able to do whatever you make them believe they can. Things may look different, yes. But there is a way and he can do whatever he believes that he can.” That’s pretty much been our mindset since then. We find ways that he can do everything we do & it’s such a joy to see his face light up!

We cannot wait to get fitted for Ryker’s first big boy wheelchair in December so we can continue following him while he makes his own way through this life!

Thank you to Ryker's mom, Taylor Parette, for submitting this awesome story. Our kiddos can do whatever they want if they set their minds to it!

If you would like to submit a story, email [email protected] with the subject "My Spina Bifida Story" and be sure to include your best picture!

My Spina Bifida Story - Donovan Ellis

Donovan is now 10 years old, and honestly he is just like every other boy his age. He just has a wheelchair. Like a handful of individuals with Spina Bifida Donovan is non-amblitory, but that does not slow him down. He is playing wheelchair basketball at the Lakeshore Foundation for the the Sharks for his third year. His dream at this point in time is to get a college scholarship for basketball and continue to play as long as he can. With the basketball Donovan has also played T-ball, and participated in adapted jujitsu.
You would never know that Donovan spends half his time at various doctor appointments, and has collectively spent 1/4 of his life in the hospital, based on his attitude.... he has such a positive out look on life. As a matter of fact if you ask him why he is in a wheelchair there is a good chance your answer may be 'I was attacked by a shark's or 'bear'
I say all this say, Donovan may Spina Bifida but it most certainly does not have him.

Thank you to Samantha Ellis for submitting this inspiring story about Donovan!

If you would like to submit a story, email [email protected] with the subject "My Spina Bifida Story" and be sure to include your best picture!

Wear teal for World Spina Bifida Day, OCTOBER 25TH, and tag us in your post!

There is still plenty of space to register for this event! Come out and join us for a fun day of bowling!

Registration for this event is now open! Lanes will be limited so please register early. If we have enough teams sign on, we will have two bowling rotations, which is another reason we need to have early registration to gauge interest. There is no fee to register, but teams are asked to fund-raise a minimum of $150 per 5-member bowling team. There will be medals for the top-scoring team, a medal for the top-scoring individual, and a plaque and gift will be given to the top two event donors. If you have any questions, please email [email protected] or call 256-919-7988 for more information. To register, visit https://secure.frontstream.com/2023gadsdenbowlathon

or you can email your five team member names and shirt sizes to the above email. We hope to see you there!!

There is still space to register!

Registration for this event is now open! Lanes will be limited so please register early. If we have enough teams sign on, we will have two bowling rotations, which is another reason we need to have early registration to gauge interest. There is no fee to register, but teams are asked to fund-raise a minimum of $150 per 5-member bowling team. There will be medals for the top-scoring team, a medal for the top-scoring individual, and a plaque and gift will be given to the top two event donors. If you have any questions, please email [email protected] or call 256-919-7988 for more information. To register, visit https://secure.frontstream.com/2023gadsdenbowlathon

or you can email your five team member names and shirt sizes to the above email. We hope to see you there!!

My Spina Bifida Story - Logan McCool

Born in 2016, Logan Elyse entered the world via c-section and began defying every odd stacked against her.

Her parents were originally told that Logan would have no quality of life, wouldn’t be able to eat or drink on her own, and possibly may not make it beyond infancy due to her myelomeningocele Spina Bifida diagnosis while in utero.

Despite having a total of 3 brain surgeries, 3 back surgeries and 2 leg surgeries in her first two years of life, Logan has THRIVED!

She is currently the national champion for Children’s Miracle Network Hospitals and has enjoyed traveling the nation promoting this charitable organization. She is a model with the Forward Agency and has been featured in Carter’s Clothing advertisements as well as a Cartoon Network commercial.

Logan Elyse is a full-time wheelchair user who loves to ride horses, practice karate, play t-ball, conduct science experiments, decorate cupcakes, create crafts, and says she wants to be a veterinarian when she grows up.

Logan continues to live life to fullest and adapt to anything that comes her way!

Thank you to Candice McCool for submitting this story about her amazing daughter!

If you would like to make a submission, email [email protected] with the subject "My Spina Bifida Story" and be sure to include your best picture!

Get an awareness profile frame here

SBAM 2023 2023 Awareness Month frames

What do you want the world to know? Would you like to share your story? If so, contact us at [email protected].

Would you like one of these cover photos personalized with yours or a family member’s picture? If so, email [email protected] with a picture.

October is Spina Bifida Awareness Month! Join us in raising awareness this month by sharing your stories and facts about Spina Bifida.

We have exclusive Spina Bifida Awareness Month items in our SBA Shop on our website! Take a peek https://www.spinabifidaassociation.org/sba-shop/

If you've already ordered something, let us know in the comments!

WALK-N-ROLL 2023!!!

Thank you to everyone who came out to this wonderful event! We are grateful to Montgomery Zoo for once again letting us host at their awesome venue! Because of our amazing families and sponsors, we were able to raise $18,000 and make this Walk-N-Roll one of the best ever!

HUGE thank you to all of our amazing Walk-N-Roll sponsors!!!

Reminder that if you were not able to register, onsite registration is available for $20 per person. Can't wait to see everyone tomorrow!

Reminder that registration is open! Can't wait to see everyone on October 28th!

Registration for this event is now open! Lanes will be limited so please register early. If we have enough teams sign on, we will have two bowling rotations, which is another reason we need to have early registration to gauge interest. There is no fee to register, but teams are asked to fund-raise a minimum of $150 per 5-member bowling team. There will be medals for the top-scoring team, a medal for the top-scoring individual, and a plaque and gift will be given to the top two event donors. If you have any questions, please email [email protected] or call 256-919-7988 for more information. To register, visit https://secure.frontstream.com/2023gadsdenbowlathon

or you can email your five team member names and shirt sizes to the above email. We hope to see you there!!

Please join us for our 2023 Walk-N Roll on September 23rd at the Montgomery Zoo! Registration begins at 10 a.m. and the walk will start at 11! Lunch will be provided, as well as all-day entrance at the zoo with many fun activities! For more information and to register visit the link below. We hope to see you there!

https://secure.frontstream.com/walknroll2023

Thank you to Margaret Goolsby for your Camp Friends donation!!

Thank you to Cure Medical for your Camp VIP 2023 sponsorship!

Thank you to Jack's in Dadeville, AL for your Camp VIP 2023 sponsorship!

Thank you to Basecamp Fitness for your Camp VIP 2023 sponsorship!