Hi! I’m Braxton’s mom. I asked him to tell me a little bit about living with Spina Bifida and this is what he said….
I was born with this and usually you need at least one surgery to fix it but I have had a lot of surgeries. I will still need more. Living with Spina Bifida is hard. You might think it’s not so fair that other people don’t have it but, once you meet others with Spina Bifida it’s a whole new world. I have lots of friends that have it. For me, I used to try to act like other people because I’ve had a lot of bullies in my life that make fun of me. But, I just know that everybody is different and other people are going through the same thing. I have a lot of friends that go through this too and I am not going to let the bullies do this to me. I just stared a new school and it is much better. I wish that people would just know that I may be different but I am really no different then others with Spina Bifida. I would rather they just ask me questions. You’ll meet a lot of mean people in life but just ignore them and keep moving forward. There’s a lot of sports that you can still do and that’s why I want to be in the Olympics one day.
I love how Braxton addresses the issue of bullying. I know there are a lot of people (children and adults) out there who tend to bully people for looking different. Why? If you just asked that person more about their differences you would see that we are really all the same.
I hope each and every one of you take this very simple lesson today, taught by the amazing 9 year old Braxton, and remember to be kind to one another.
When I was born the doctors told my mother that I wouldn’t live to see college. They also told her that I would never be able to walk, or even push myself in a wheelchair. Well, they were wrong about all of it.
I can walk with the help of a crutch and braces, I’m only in a wheelchair for longer distances. I will also be going to college here in a couple of months. Determination is what has gotten me to push past everything they have said I wouldn’t do and I still live by that today.
I love Makenna’s story of perseverance and determination. We all should try not to allow our differences to have any sort of negative impact on our lives…EVER! right? Makenna is the perfect example of that!
I was born in August of 1980 to a mother who had never heard of Spina Bifida and had no idea during her pregnancy that anything was wrong. It wasn’t until she was giving birth to me and I was delivering breach that the Dr. realized something was very wrong. After they got me out they whisked me away without letting her see me or saying what the problem was. A little while later the Dr. came to her handed her a small book (which I still have) and said, “she is alive and this is what she has”. He then told her all the things he thought I wouldn’t be able to do…he said I would never walk, I would have severe learning disabilities, I would have hearing and vision problems due to hydrocephalus and would need a shunt. He gave me a less than 50% chance of living past my teenage years. He recommended that she just put me away in an institution somewhere and try to have another baby. Luckily for me, she refused. He also wanted to go ahead and put a shunt in though the pressure in my head wasn’t changing “just in case”, this she also refused.
Long story short. I can walk (with crutches) I am only paralyzed from the knees down. I took regular classes in school and graduated with an IQ that scored the highest in my school. I obviously lived passed my teen years. I never needed a shunt and never got scoliosis. I have been married, worked and done all the things a normal adult does. So, in short I have proven his every prediction wrong.
I guess the moral of my story would be, don’t ever let anyone, Doctor or otherwise, tell you what your child with Spina Bifida will or won’t do. They are not psychics and can’t tell the future! I am Amber and I am still here loving life. Thank you for your time and allowing me to share my story.
The most common thing I hear in all these stories is that unfortunately these parents are given such a grim outlook for the life of their child. Many are so scared that they end up aborting their child before even giving them a fighting chance. Yes, your child will have some challenges but they will still lead a happy, successful life. Amber is the perfect example of that!
Hi! My name is Amie and I was born in 1989 to my parents, Janet and Al, who were completely surprised by the diagnosis. As my doctors explained it, I was born with “my nerves spilling out like spaghetti” and my doctor’s whisked me away without giving them a chance to hold me for quite a while. After a trip from Malden, MA to Boston Children’s Hospital via ambulance, I had my first surgery (spinal closure) at 11 hours old, resulting in a scar that I “affectionately” call my crater. About two years and two more surgeries later, I was fitted with my first pair of AFOs, leg braces, and took my very first independent steps. Approximately 3 years after that (as a kindergartener), I had my first of 4 bladder-related surgeries. Overall, in my 29 years, I’ve had 9 Spina Bifida-related operations, my tonsils removed, and wisdom teeth extracted. While this number makes me feel like a hospital frequent-flyer, I know that I’m lucky and that others have had FAR more. I was lucky enough to not need a shunt at birth or later in life, and other health issues haven’t crept up yet. It’s an interesting feeling, though, to be so young and feel as though I’ve lived through so much. As individuals with a disability, we learn to adapt and “power through” the tough times with what we’ve been given and we really know no other way. And I’m not sure if I’d change that. (But ask me another day and maybe I’ll have a straight answer for you.)
I was raised to not let Spina Bifida take away from my life. I played town soccer, learned to water ski at 12, swam a lot (and still would if I had the time!), went away to college (Keene State-NH), got my Master’s Degree (Reading Specialty), worked my way to a great job that I love, got married, bought a house, and hope to have a family. I owe all of these things to hard work and determination, but also to the friends and family surrounding me who never treated me as “different.” I’m just Amie…..but I happen to have Spina Bifida. Even just being able to come to that conclusion took hard work. Accepting this side of me takes constant work. I often viewed my life as having two parts: the “normal” (hate that word) part and the Spina Bifida part. Meshing the two together is a goal I feel that I’m finally close to achieving. One way I’m working toward that is becoming more involved with the Spina Bifida community. I’ve had some opportunities to share my story locally and across the country and I’m now going to serve on Advisory Boards for the National Spina Bifida Association (with Kristin!). My hope is to continue this involvement, which includes attending Teal on the Hill in 2019 to advocate for the community in Washington, D.C. Platforms like this one are close to my heart because they allow those affected by SB to come together and connect.
I love that Amie talks about how living with this side of her is constant work. But, she is becoming the perfect advocate for herself and for the Spina Bifida community. It is because of people like Amie that the rest of the world will know what Spina Bifida is really like and she (along with everyone that shares their stories all over the world) will shed light on living with the disability to show people you can have Spina Bifida and be like everyone else!
A: My name is Jamie. I don’t have Spina Bifida but, I do have congenital hydrocephalus.
Q: How old are you?
A: I’m 30 yrs old
Q: How can we continue to follow your journey?
A: on IG @shuntedmdphd
Hi, my name is Jamie. I am a 30 years old, living with hydrocephalus. When I was diagnosed at 4 months old no one knew exactly what to expect. Some feared I would not be able to keep up with my peers, let alone excel, some have pre-judged my abilities because of my diagnosis, but thankfully my family never did. I was valedictorian of my high school class, graduated summa cum laude with a bachelor’s degree in Molecular Biology, and am currently in a Medical Scientist Training Program working on an MD and PhD.
A lot went into my decision to become a doctor and do research, but it really comes down to one fact my neurosurgeon told me my junior year of high school, “Half of shunts fail within 2 years.” I had just found out I needed another brain surgery, my 7th surgery and 4th neurosurgery at that point. Doctors, CT scans and surgeries had always been a part of my life, but it was not until that moment that I realized how truly lucky I had been on my hydrocephalus journey and how unreliable the current treatments for hydrocephalus are.
In the last 3 years, while in graduate school, I have undergone 10 more hydrocephalus-related neurosurgeries, including VP shunt revisions, intracranial pressure monitoring and an endoscopic third ventriculostomy (ETV). My once frequent migraines are now daily, but I am learning a new normal, managing and working through the pain. I know I will need more brain surgeries and I will probably never be headache-free, but I am determined not to let it keep me from my dreams. I love getting to help others facing health challenges, as a doctor in training and leading the Houston Hydrocephalus Association Community Network.
Living with hydrocephalus has not been easy, but through it all I have gained invaluable experiences that have helped me realize my dreams and that will help me to be a better physician and researcher. I truly believe that there is a purpose behind all the pain. I can see how my struggles and seeming disabilities helped me get to where I am today. They enabled me to hone my problem-solving skills, taught me to ask for what I need, and inspired me to use my talents to help others facing health challenges. Always keep an eye out for the blessings within every challenge.
Although Jamie does not have Spina Bifida I found her story very valuable. You see, most people living with Spina Bifida also suffer from Hydrocephalus just like Jamie. It is a condition where cerebrospinal fluid builds up in the brain. Unfortunately this requires brain surgery (more then once usually) to rectify this problem which can be pretty scary stuff.
But, Jamie goes through all of that with a smile on her face and doesn’t let anything get in the way of her dreams! She is an incredible example of perseverance and dedication! I’m so happy to have met such an inspiring woman and look forward to following her journey!
With a week away from the biggest fundraiser for the Spina Bifida Association of Greater New England (SBAGNE), the Falmouth Road Race (FRR), I wanted to take a moment to acknowledge the people that I will be running alongside! This year, along with myself and my husband, my dearest friend Robyn will be running with us too!
All of these people are being affected by Spina Bifida in some way and are coming together in this powerful showing of support to raise money for the an organization that benefits the Spina Bifida Warriors of greater New England.
So, in no particular order, let’s meet these amazing people and learn why they’re running…
This is Dave. He runs the race every year in remembrance of his college roommate Mike. Dave says, “Mike was s great guy, awesome roommate and a ton of fun. When Mike passed away it was all I could do to keep running, raising funds and keeping his name alive.”
“My name is Matt and I have been running for SB every year, but one, since 2009. I run for SBAGNE and for my daughter; Grace was born with SB back in 2000 and I can’t tell you how important SBAGNE has been in our lives since then! SBAGNE has been such an important resource for use as we learned about SB and got to know so many fantastic people living with SB just like us!”
“My name is Dan. My son Liam (2 years old) was born with SB so I run for him and all the other children, adults & families that have been impacted by SB. And of course to support SBAGNE!! In just 2+ years the group has already been such a great resource and source of support/platform to connect with other families & children affected by SB.”
“I’m Caitlin (or Cait) and have been running with SBAGNE for eight years now. My brother, Patrick, has Spina Bifida and I run in his name every year, and for all those who are affected. SBAGNE has always been an important part of our family, especially when we were young – I have very fond memories of chilling out at ‘wheelchair sports’, which was my brother’s favorite thing to do on Saturday mornings. “
“My name is Brian. Back in 2002, I helped put the original ‘Team MSBA’ together (we hadn’t yet expanded from MA to New England) to run the Boston Marathon. Over the course of three years, the team raised a ton of money and awareness. And we made some great friends – Dave was a part of that crew. We moved on to Falmouth in 2005, and we’ve been enjoying this great tradition ever since. “
“My wife, Cara, and I have been quite involved with the spina bifida community in New England since shortly after our oldest daughter, Katie (now a junior at Merrimack College) was born with spina bifida in 1998. We each had a turn or two as both Vice President and President of the chapter and I served on the National SBA board. The organization has been an amazing resource for our family – providing resources, answers, and lasting friendships. “
“My two sons, Dan and Kevin, have been running Falmouth with me the last few years. I can still keep up with only one of them. Dan is soon to be a freshman at Boston College and Kevin will be a freshman at North Andover High School. It makes me very proud to see them giving back to the community to honor their big sister. She has inspired us all. One day, I hope our youngest daughter, Laura (11), might also join the team. “
Kim & Hannah are running for the first time. “We are so happy to be part of the team. This will be the first time Hannah and I are running Falmouth and we are so looking forward to it. My son Ryan ran Falmouth in honor of his brother Sean twice in the past for the team back in 2006 & 2007. We have been involved with SBAGNE for many years even back when it was just MA. Hannah and I have done many fundraisers for this group over the years (pocketbook and jewelry parties) and now it’s our turn to tackle Falmouth! Sean is frequent customer of Children’s this is the first opportunity we have had a break in action so to speak so we are taking every advantage to run for Sean!”
“My name is Amy & this will be my second year running this race with my hubby Steve. Last year we ran in the Duo Division & I pushed Tyler in our first race! So much fun, BUT Tyler is 12 now & too cool for school so, no pushing this year 😂 I run for my son, but also for everyone living with SB! I am the Vice Chair on the BOD for SBAGNE & think this is my favorite event that we do!! I am a CPT & spend my time working with clients & teaching classes!” Amy will also be dedicating her run this year to her dear friend Chris who recently passed away from brain cancer.
Meredith is running for the first time as well. She is running for her 9 year old daughter, Samantha, that was born with spina bifida.
Emily is running for the first time this year too. “I have enjoyed reading everyone’s stories so far. This is my first year running the Falmouth Road Race. I am running for my son Luke who will be 5 at the end of July. He is a neat kid with a HUGE personality. I have family and friends who encouraged me to run this year and will also be running this year.”
Rich is running for his daughter Anna. “My name is Rich and I have been running Falmouth for my daughter Anna and all those impacted by SB for the past 8 -9 years. And, with the exception of 2016, I have run Falmouth every year since 1996. I orginally got a number to run as a volunteer at the start line for several years and also ran for CFF (Cystic Fibrosis Foundation) for a couple of years. So, yes…the Falmouth Road Race is in my blood!”
“Our daughter Anna is an identical triplet; Anna and her sisters Allie and Emily were born in 2007. We received the “I see three babies” news just six months after our first daughter Abigail was born still on June 4, 2006. Because there was no explanation for Abigail’s death, we were given the go ahead to have another pregnancy when we were ready.”
“So…after receiving the shocker that Sarah was pregnant with identical triplets, we were told that Baby B (Anna) had spina bifida. I went from learning about stillbirth (which I know nothing about) to learning about SB, which I knew nothing about. Despite the prognosis at the time that Anna would “best case be able to walk with assistance (braces, walker, etc.)” Anna has beaten the odds! Her myelomeningocele (around S1) has limited her a bit in terms of physical activity, but she is able to do most things girls her age enjoy – dancing, swimming, etc.”
Jackie says, “This is going to be my first year running Falmouth and I am beyond excited! I was inspired to run with this team after hearing about previous years through my coworkers, from what I have heard it is a blast and everyone seems to really enjoy it. I currently work at Boston Children’s Hospital in the Urology department. On Fridays I get to help out with the Spina Bifida Clinic in Waltham. Throughout my time here I have been able to really connect with some of the patients and families that come to our office!” (not pictured)
Kristen is also running the race for someone special in her life. She says, “This will be my 5th FRR running with SPAGNE. I run in memory of my son, Ben who was stillborn and would have been affected by SB had he lived a single day. This year Ben would’ve turned 13. I’m awed and inspired by each of you whom by the grace of God have kept Ben’s life purposeful, meaningful and very much an ongoing part of my life.” (not pictured)
As you can see, we all have a story, someone special to run for and all for a great cause! I know I will be thinking about everyone I have met along the way in my Spina Beautiful journey. I’ll put one foot in front of the other in honor of those who are a little less fortunate then myself and show everyone that even though I have Spina Bifida I can conquer this 7miles like a champ! Go team!
The doctors diagnosed Kenji at 18 weeks of gestation. For my husband and I it was very hard because we did not know anything about Spina Bifida. Many bad thoughts came to our heads about what Kenji’s life would be like. The doctors offered to abort but I said I was not going to stop the pregnancy, that I was going to have him as God intended and love him as he was.
I started to research Spina Bifida and I learned that having Spina Bifida does not limit you to anything you want to achieve. That every home where there is a person with Spina Bifida is blessed because God gives his more difficult battles to his best warriors.
Every time I went to a medical appointments in Boston at the Tufts Hospital they found something wrong with my Kenji. Every week they told me more bad news but I decided from the beginning to put it in the best hands, the hands of God. I believed with great faith that he would give me what he thought fit for me and my son. Well, he gave me more than I could have asked for!
When Kenji was born he was beautiful! He was immediately taken to intensive care. He was born at 2 in the afternoon of January 9, 2018, and at 7 o’clock the next morning he was being operated on for 9 hours. My little one fought! Surgery went very well. We spent 10 days in Tufts. In those days I did not leave his side for a moment. Next, they had to operate on his head because he still had fluid on his brain. He was sent to the Children’s Hospital with Dr. Benjamin Warf. God is so big that when Kenji arrived for that surgery they decided not to operate because the fluid was decreasing. Instead, they kept him for observation for 3 days to repeat the study. When they did the study again it was better than the previous ones.
Today doctors are surprised with Kenji! His diagnosis was that he was not going to move, he would not even be able to recognize me. But, God is the one who has the last word! On July 13th of the same year the doctor told us that Kenji’s brain was developing normally and he was no longer at risk of hydrocephalus. Kenji is surprising because he is developing as if he was not born with Spina Bifida. Kenji is a very active, very intelligent baby at 6 months old. He already sits alone, plays and recognizes everyone and is very awake and happy. I know that God has a very big purpose with him and our lives since we were given this great miracle that is Kenji. I would not change the whole process that I had to go through in my life to have him. He had to get to me in this way. Before Kenji we lost two pregnancies and twins 5 years ago. God has been very merciful with me to give me one of his angels. He gave me more than I could’ve dreamed!
Thank you for allowing me to write you Kenji’s story. I hope it is not too long, although in fact it is 😊 Sorry but I had to tell everything about my miracle. Thanks😘
El es mi hijo Kenji , los médicos lo diagnosticaron a las 18 semanas de gestación , para mi y mi esposo fue algo muy duro porque no sabíamos que era realmente espina bífida nos llegaron muchos pensamientos malos a la cabeza de cómo sería la vida de Kenji , los medico no querían que el naciera pero yo dije que si iba a nacer que no iba a parar el embarazo que lo iba a tener como dios me lo diera y que lo iba amar como sea que el estuviera .Desde que me dieron la noticia de su condición me puse a investigar sobre espina bífida y vi niños bellos extraordinarios y aprendí que tener espina bífida no te limita a nada que quieras lograr , que cada hogar donde hay una persona con espina bífida es bendecido porque Dios le da las batallas más difíciles a sus mejores guerreros . Cada vez que iba a una cita médica en Boston en el hospital de tufts le encontraban algo malo a mi Kenji , todas las semanas me decían que tenía algo malo,Pero yo decidí desde el principio ponerlo en las mejores manos , las de Dios y creer con mucha fe de que el me daría lo que él creyera conveniente para mi y para mi hijo , y el me dio más de lo que le pude aver pedido. Cuando Kenji nació fue hermoso , de inmediato lo llevaron a cuidados intensivos el nació a las 2 de la tarde del 9 de enero del 2018 y ya a las 7 de la mañana del día siguiente lo estaban operando , duro 9 horas la cirugía , le pusieron mucha sangre pero mi chiquito lucho,Y salió muy bien de la cirugía , pasamos en tufts 10 días , en esos días no me fui ni un instante de su lado , luego el doctor nos dijo que tenían que operar su cabecita porque avía subido líquido y nos mandó al children’s hospital con el doctor Benjamin warf , pero Dios es tan grande que cuando el hizo la resonancia a Kenji decidió no operarlo porq el líquido estaba disminuyendo y lo dejo en observación por 3 días para repetir el estudio,Cuando lo hizo este estudio estaba mejor que los anteriores , al día de hoy los médicos están sorprendidos con Kenji porque su diagnóstico era que no iba ni a moverse, nisiquiera iba a poder reconocerme pero Dios es quien tiene la última palabra . El 13 de julio de este mismo año 2018 ya le hicieron la última resonancia de la cabeza a Kenji y el medico nos dijo que su cerebro se está desarrollando normal y q ya no tiene riesgo de hidrocefalia que Kenji es sorprendente porque se está desarrollando como si no hubiera nacido con espina bífida , Kenji es un bebe muy activo muy inteligente tiene 6 meses ,ya se sienta solo ,juega y reconoce a todos es muy despierto y feliz y se que Dios tiene un propósito muy grande con el y nuestras vidas ya que nos dio este gran milagro que es Kenji . Y no cambiaría todo el proceso que he tenido que pasar en mi vida para tenerlo a él ,porque el tenía que llegar a mi de esta manera , antes de el perdí dos embarazos el último era de gemelos hace ya 5 Años ,Dios ha sido muy misericordioso con migo al darme uno de sus ángeles y me dio más de lo que le pedí .
My name is Mada and I have Spina Bifida. I try to live my life to the fullest!
When my mom found out I had Spina Bifida she decided to name me Mada. She wanted an Irish name that resembled the way I was going to live life. She knew I would have to fight to just be here. Mada means powerful warrior in Gaelic. When I was born my parents didn’t know if I would be able to walk but I did when I was about 5. I started to swim when I got to the age of 10 and I’ve even participated in the Paralympic events in Colorado.
I got to meet Michelle Obama! When I get older, I want to be an advocate for people with disabilities and I got to talk to her about that. I even started Crossfit and it has been SO AWESOME!
I just want to motivate people to do things that they can’t even imagine and show people ways that I have not only adapted to Crossfit but, to life! People with disabilities can do the same things that other “normal “ people can do, we may just do it a little differently.
I want people to know that they’re not alone and there are always people who are going through the same things they are. I can’t express that enough!
To say Mada is incredible is an understatement! At the young age of 15 she is already on her way to being a very successful young lady. I wish I was even half as brave as she was at that age. I see greatness in her future and look forward to following her journey! GO GET EM MADA!!
The act of having the ability to identify ones self in any way they see fit. The human race is very diverse. So, no labels needed here. Just people living their lives to the best of their ability with no barriers, discriminations or stigma.
The other day I read a story in the news about a little girl in middle school who took her own life. She was bullied so badly on the way to school everyday that it was too much for her to bare. If that wasn’t sad enough I continued to read the comments that followed the article. Everyone was so quick to point fingers and believe it or not they were bullying each other while arguing about why a little girl would do this after being bullied. Insane right?
The point of this is not to try and figure out why a middle school child would take her own life but to talk about ways that we could be more accepting of others differences and arm the future with the ability to love each other a little better in hopes that things like this and other issues going on in the world could be avoided.
I can’t relate to the feelings of wanting to take my own life. However reading this little girls story had me thinking about how I felt as a child growing up. I can definitely relate to feeling different and isolated. My disability is invisible, making it hard for others to know what it is like to live with such challenges and relate. I often kept to myself or just immediate family about what I was going through because other “normal” children my age would never understand. These pics are just a couple of things I went through as a child that no one could see. I lived with bags under my clothes and scars all over my body.
Some children were cruel, some adults were naive, and sometimes my community was inconsiderate. Thinking back to those days I reflect back on my own adulthood and am wondering if I’ve made others feel isolated or discriminated. Unfortunately, if I’m being honest, I’m sure I have.
I wish I could read peoples minds and know what they need from me. I want to say the perfect things so everyone knows they are valued…. unfortunately, I can’t read minds. So, what can I do to help this problem? What can I do to make everyone feel like there is no “normal” but just a bunch of differences that make us all wicked cool?
I’m going to be kind. YUP, that’s it. I’m going to live my life more conscious of the fact that everyone is different and that there are invisible factors in peoples lives that make them perfectly imperfect. We all do! I’ll teach my children this same lesson and they will teach their children and then future will be bright!
I truly believe that if each of us could live a little more sensitive to the things we can’t see and also be more inclusive of others differences, then we could have a much happier tomorrow. It starts with just one person, YOU! KINDNESS MATTERS!