Meet The Teams
Liam's Line Crew
Liam is a 2-year-old boy who was born with Spina Bifida. He was born June 13th 2019 at 38 weeks gestation. When his mom, Ashlyn was pregnant with Liam her and her husband found out when she was only 20 weeks pregnant that Liam had Spina Bifida.He recently just got his 3rd surgery to help his spine grow with him. Liam is a walking, talking, running, funny, crazy little boy today. He is a walking miracle and he lights up any room he goes into. Spina bifida doesn't define him it makes him who he is today.
Ruby Grace Breininger
Welcome to Team S5 (Strong, Smart, Sassy, Spina Bifida Supergirl). Meet our S5 girl Ruby Grace Breininger. Ruby just turned 3 and is full of smiles and spunk. Ruby has 3 siblings, her big sister Emma Grace watching over her from Heaven, and her two big brothers Maximus, 6 and Maverick, 4 her partners in mischief here on Earth. Ruby was diagnosed with Spina Bifida myelomeningocele at 20 weeks gestation. On March 12, 2019 we had our diagnosis day at CHOP that did not go as we had hoped. Ruby had a large lesion from L1 to S4. We were told our daughter would likely never walk and would have many complications. We found out she was eligible for in-utereo fetal surgery but was denied due to my previous health history. So, the search began. I got denied at 3 other hospitals and the clock was ticking. John Hopkins agreed to take on our case and we went through an enormous amount of testing, only to finally receive a phone call from Hopkins asking if we could be in North Carolina, UNC in two days to have open in-utereo fetal surgery done there. We uprooted our lives, I committed to 4 months of strict bed rest and Ruby and I underwent in-utero fetal surgery at University of North Carolina (UNC). So we made it work. On April 9, 2019 Ruby was born into this world, well her little bum and back at least. Talk about miracles everyone, we were surrounded in prayer and love and the surgery was success. They were able to get a full closure on her back and I recovered well in the beautiful warm weather of spring in North Carolina through April. I returned home to Pennsylvania on strict bed rest. Early May I went to John Hopkins for a follow up visit, to find my water had broken and I was admitted. After a month at John Hopkins on May 31st nearly two months early Ruby made her second appearance and entered the world weighing 4lbs. The in-utero surgery caused her Chiara Malformation to reverse, she has movement (though limited) in her right leg and movement in her hips. We had a month long stay at the NICU at John Hopkins and a week stay at the NICU at Hershey. Ruby also has hydrocephalus and has undergone 4 brain surgeries, first ETV surgery, reopening her ETV and then placement of her shunt which was exactly what she needed. Ruby has complications with her kidneys, bowel and bladder. Ruby also has hip dysplasia and has a large limb length difference. She wears HKAFOs, has a walker, GoBro, sticks and a wheelchair. She is fearless and fast in all her assistive equipment. Her favorite is standind and walking. She does tons of therapy and have the most amazing nurse Sondra who is one of Ruby’s biggest fans. We have overcome a lot of hurdles and challenges but one thing remains, Ruby is the greatest source of love and light. She lights up the room, has the most contagious laugh you have ever heard, she is perfectly herself. She has a determination and drive that serves and will continue to serve her well in life. She truly is our smart, sassy, strong Spina Bifida super girl and we could not imagine a world without her! She is going to do amazing things. We are so excited for our first year joining Laps for Liam!
Sophia Rae Riggleman is a two year old little girl who was born with mylomeningocele form of Spina Bifida along with that diagnosis she also has hydrocephalus and Arnold charii 2 malformation. Sophia at 1 day of life had her spinal closure surgery and at 1 month of age she had a VP shunt placed in her head to help with the hydrocephalus ,again Sophia had to have another surgery at 4 months old when she a shunt malfunction. Daily Sophia struggles with bowel and bladder issues do to her Spina Bifida. Sophia has to be cathed every 4 hours and takes miralax and bladder medication on a daily basis to help with these issues. Despite everything that she has gone through at such an early age she has also accomplished alot of milestones that haven't always come easy but she did it with grace and willpower and great determination. She has had many wonderful therapist and doctors that have helped in her success. Sophia is a happy , loving, affectionate, caring little girl . She brings joy to everyone she meets. The world is by far a better a place with her in it ,she will defeat the odds and do great things!
Tobyn was born at CHOP on July 18 2020. At 29 weeks gestation we found out Tobyn had spina bifida. At 23 weeks we were headed to CHOP to see if we were approved for the surgery, 25 weeks we had fetal surgery to repair her back she was diagnosed with (Myelomeningocele). At 30 weeks Tobyn was born 3lbs 6oz. She currently shoes no signs of hydrocephalus, is able to crawl and working on standing and walking with a therapist. She spent 42 days in NICU.
Nathaniel was diagnosed with Spina Bifida at 20 weeks gestation. He underwent fetal surgery when his mommy was 25 weeks pregnant. He was born at CHOP on May 5th 2018, spent 2 weeks in the NICU and has had one additional surgery since birth. Nathaniel has two dislocated hips and has no function below his ankles but doesn’t let that slow him down one bit. He uses HKAFOs, AFOs, a walker and a wheelchair. He is smart, funny and super fast ! We call him our Spina Bifida Warrior, he is brave and fearless. He enjoys going to school and all is therapy sessions. He is a social butterfly. Nathaniel loves to play with cars, balls, and pretend kitchen. He is obsessed with muppet babies and the cars and Toy story movie. Despite all the obstacles he faces Nathaniel is the happiest little boy we know, he doesn’t let Spina Bifida define who he is and has been beating the odds since the day he was born.
We found out about Logan’s Spina Bifida diagnosis just one month prior to his due date. We quickly developed a new birth plan with CHOP and he was safely delivered on August 1, 2018. We spent ten days in the NICU where Logan underwent his fist spinal surgery at just one day old. After Logan was sent home, we did weekly trips for four months to CHOP for serial casting to correct his clubbed feet and hyperextended knees. Today, at almost four years old, Logan has undergone a total of five surgeries. Logan is paralyzed from the mid thigh down with bilateral hip dysphasia and happily goes to physical therapy three to four times a week. Despite numerous surgeries, countless doctors appointments and physical therapy appointments, Logan is an extremely positive and happy kid. Logan is obsessed with Star Wars, Spider Man, Blippi and Frosty the Snowman. He loves to learn and make new friends.
Racing for a Reason
Sophie was born June 4 2018.Sophia was born at 36 weeks with myelomeningocele at L4-L5. And Hydrocephalus. Shunted a week after spinal closure. Chari Malformation surgery at 1 year of age. She been though 5 shunt revisions. She walks with HKAFO’s with (RGO assist) and a Kay-walker. Under guidance of parents or therapist. She wears glasses for CVI and a lazy eye. Caused by the hydrocephalus. She is so happy and tries to make others happy as well, regardless of her own limitations. She’s such an inspiration to all who have met her.... Including my wife and I. She is my inspiration for Sophia Rayne’s Racing for a Reason! May she inspire you as well!
Our warrior, Jonah Joseph Webby, was born November 20, 2020. Jonah was diagnosed with Mylomeningocele, a type of Spina Bifida, with an opening on his spine at T12 along with Chairi Malformation Type II, and hydrocephalus during his 18 week anatomy scan. Shortly after, Jonah had open fetal surgery on September 4, 2020 at 23 weeks gestation to close the opening on his spine at the Childrens Hospital of Philadelphia. With almost 3 months of bedrest, help from family and friends, and the brilliant nurses and doctors at CHOP, Jonah was born at 34 weeks. He had a 19 day NICU stay for premie reasons and finally came home December 9, 2020. If you were to look at a diagram of where specific nerves lie on the spinal cord, Jonah’s diagnosis would say that he would be paralyzed from the waist down. Our son no longer has Chairi of the brain and has movement all the way down to his toes! When Jonah was 2 months old he had a VP shunt placed to control his hydrocephalus that has not failed since. Every single month, our warrior is hitting milestones! Since Jonah was 2 months old, he has been working with his amazing physical therapists, Leah, through Early Intervention and Sarah and Jean through John Heinz Pediatrics. The year 2020 will be a year this entire world will never forget due to the pandemic, but now our family and friends have a happy memory from that year. We witnessed our miracle baby! As a parent of a child with a disability, it took a long time for me to write our son’s medical history down in these short few sentences knowing the world would see it. We forever want to protect our son’s journey as he won’t be a baby forever. This is his story, not ours. And one day I want him to tell it the way he wants to. But here’s the thing- we ALL have problems. Whether it be illness, the want to be taller or shorter, and so on. When we hear the word disability, I think it throws people into a tailspin that their life isn’t as fulfilling. Aren’t we all a little disabled? Aren’t we all different? That’s what gives us all beauty. Everyone has challenges! Jonah has opened my eyes to this incredible world of faith, knowledge, love and that ANYTHING is possible. We are so blessed to watch the fight in our son day in and day out. Everyone’s Spina Bifida story is different but ours is my favorite. Please consider buying a T-shirt for team “Jonah’s Pack” as all proceeds will be donated to the Children’s Hospital of Philadelphia Spina Bifida Clinic!
Hi my name is Briggs! When my mom was 20 weeks pregnant my parents found out that I had myelomeningocele spina bifida. I was born on March 3, 2022 and at just one day old I had surgery to repair. At 1 week old I began to fill with fluid and had to have a shunt put in. I spent also 2 weeks in the hospital. My journey has been a rough one but giving up is not in my favor! This is my story
Margaret & Harper Andree
Hi Friends! We're Margaret & Harper! But you can call us Margie & Harpey or The Twinkies! We are from a small town in Pennsylvania and live with mom dad and our two doggie brothers. We are identical twins born in July of 2019 with Myelomeningoceles via c-section at 38 weeks. We were born at John Hopkins in Balitmore, MD and currently go to Children's Hospital of Philadelphia for all of our care. Combined we have 15 surgeries total. Margaret – Has had 8 surgeries since birth. Her spinal lesions were at S1 – S2. She currently wears glasses, uses AFOs and has a walker when needed. She prefers to try and walk independently and just this year we got foot surgery in hopes to improve that! Margie is our mother hen. She loves her babies, mickey mouse & giving hugs. She also loves all things girly. Harper – Has had 7 surgeries since birth. Her spinal lesions are between L5-S1. Harper uses HKAFOs, AFOS, has a gait trainer and wheel chair when needed. Since having tethered cord release surgery in March we have notice a ton of improvement on Harper's mobility. Harpey is our sassy cat. She loves anything music and loves to make you laugh. Harper is 1000% a daddy's girl.
Spina Bifida Smasher's
Hi!! My name is Braxtyn James Elias Dishman or as I would say “Bra.” I was born May 29th of 2019 the youngest of 6 kids. I was born with spina bifida, chiari II malformation, metatarsal adductus and hydrocephalus. While there are a couple different kinds of spina bifida, I was born with myeloschisis. Myeoloschisis means that I was born with an opening in my spine that was not skin covered. After I was born, I had surgery to close my spine before I was 24 hours old. Since I had cerebral spinal fluid leaking into my back, I had to have surgery to have a VP shunt placed a week later. Then at 6 weeks old, the doctors had to do surgery to fix my shunt. I notice my shunt now that I am a little older. I rub over it when I am bored sometimes. It is important that I wear my dynamic ankle foot orthotics to help me walk. When I want to run or if I am having trouble walking, I use a walker. Miss Melissa, my PT, helps my mom do electrical stimulation. I use my unit for one hour every day to help wake up my nerves and muscles. Personally, I love to play outside. Rocks, sticks, dirt, mud puddles and sand are my favorite. My favorite foods are french fries, pizza and “shakes.” My favorite superhero is Hulk. I wear a hulk shirt every day of the week, no really, every day. I am overcoming obstacles everyday and I thank God for always watching over me.
Diagnosis Day Warriors
Our diagnosis day warriors team is a community of parents navigating the Spina Bifida journey together. We found each other on Facebook shortly after hearing the word spina bifida for the very first time. Our diagnosis day group connects weekly via zoom and live chats. When we heard about Laps for Liam event, we knew instantly we wanted to get involved and help share the love!
Liz was diagnosed with spina bifida myelomeningocele at 20 weeks gestation. We were referred to CHOP for open fetal surgery at 26 weeks. She was brought into the world at 37 weeks, a healthy and beautiful baby. Her whole life has been filled with challenges, from several doctor appointments and surgeries, and countless therapy sessions to get her legs working at least minimally. As a seven year old, I have never seen her give up on something that was hard. She ALWAYS has a smile on her face, and brings a warmth to the room, and a smile to everyone’s face. She makes sure to include everyone who’s around her. She’s the funniest, sassiest little girl I’ve ever met. Sage always puts things in a new perspective for me. From watching the world through her eyes, to watching the world through the eyes of all who meet her and see how she makes the world work for her. She never gives up, and keeps pushing, despite all the obstacles that have been placed in front of her; and to do it with a smile on her face is the greatest thing to be a part of as a parent
Dante is a 5yo with spinabifida. He is in preschool and loves sports of any sort. Dante was diagnosed at our 20 week scan. we found chop and we qualified for fetal repair. Dante’s repair was done in December of 2015 at 25w. That’s when our warrior started battling. He is a milo open from l3-s2. Dante came at about 33w and we stood 40days in NIICU. Dante is one of the most resilient strongest kids you’d ever meet. He is silly and funny and outgoing and even after 11 surgeries and countless hospital stays you would never know what this kid has suffered through! He is our inspiration and we will forever be grateful for our warrior.
4th Annual Laps for Liam!
DATE: August 14th, 2022
Start time 11:00AM-2:00PM
LOCATION: Tiger Stadium
1298 Union Street Hollidaysburg, PA 16648
Come out and support our Spina Bifida teams and help us walk to raise awareness for Spina Bifida! We will have families from all over PA who formed a team for their kiddo with Spina Bifida! These teams will have their own team name and shirt!
We will have free food, ice cream, basket raffles, face painting, kid actives and some vendors! Help us fill the spine for the Children's Hosptial of Philadelphia!
Help us spread love to all these kiddos & head over to SHOP to order your shirt!