Meet Nina

Posted on July 20, 2014

Nineska, often called “Nina” by her friends and family, is one of our inspiring kids living with spina bifida here in central Florida. You might be in awe with her beauty, her smile, or perhaps her sweet personality – but we think reflecting on her journey will really touch your heart.

 

 

Just over six years ago Nina’s mother, Eida, had learned that Nina would be born with spina bifida. After learning more about spina bifida she elected to be a part of the MOMS research study and underwent fetal surgery while she was still pregnant with Nina with the hopes that it would improve her daughter’s outcome. One of the biggest risks of the fetal surgery is premature birth. Eida underwent surgery when she was just 24 weeks pregnant with Nina and one week later her baby girl was born weighing just 1lb 10oz and only 12 inches long.

 

 

Nina spent the first three months of her life in the NICU, even requiring emergency surgery that left her with only a 50/50 chance at surviving the surgery. Nina proved from the very beginning that she was a fighter so full of life.

 

 

Starting at a very early age Nina has been in physical, occupational and speech therapy. Nina’s mother credits many of Nina’s advancements to her therapists.

 

 

Although Nina does use braces, a walker and a wheelchair at times she has learned to walk with the assistance of crutches. Eida informed us, “having a kid with spina bifida is challenging for the family because you have ups and downs and you have to be very patient because it takes a longer time to see results but it is great when they accomplish something and it helps you appreciate life more.”

 

 

 

In her first six years of life Nina has underwent 14 total surgeries – ranging from her back closure, intestinal surgery, shunt related surgeries and most recently a vesicostomy, ace and an additonal unexpected surgery to her bladder after a car accident. Although some moments have been challenging Eida shares, “We are lucky as parents to have a kids with spina bifida, they are very special.” She tells us that along with the challenging moments come laughter and special moments that help their entire family learn and appreciate life so much more.

 

 

Eida thank you for sharing Nina’s story with our community. Nina certainly is a miracle who we feel blessed to have as a part of our spina bifida community.

 

Do you have a child (or are you an adult) living with spina bifida and would like to share your experiences living with spina bifida? If so contact Amanda Kern at amanda@amandakern.com so we can discuss the possibilities of sharing the experiences of more of our local babies, kids & adults living with spina bifida with our community.

Meet Patricia

Posted on October 14, 2012

Patricia, like any toddler, is anxious to explore and learn what the world around her is like.

 

 

Last year she was photographed as a part of our 2011 spina bifida awareness campaign and she surely didn’t let her mobility challenges keep her from moving around with the other kids.

 

 

Last year she rolled around with the other kids in a dynamic stander at just 18 months old. It’s quite impressive to see how young children affected by spina bifida can still learn ways to be just as mobile as other children. She surely hasn’t allowed spina bifida to prevent her from getting around as much as other toddlers, she just has learned to do so a little differently.

 

 

When her parents, Randi & Jeff Dowhy, first learned she’d be born with spina bifida they were heartbroken and uncertain if they’d be able to care for a child with special needs. Randi reflects, “then we saw her face on a 3-D image at the doctor’s office. It was that moment that I knew that I  could not imagine a day that that face would not bring joy to everyone she encountered, and I knew we were the right people to be her parents.” They now feel Patricia has helped make them stronger parents and realize her abilities will surpass any disability she has. Patricia’s family believes that they would never be given anything more than they could handle. They’ve come to realize that with or without a disability a child is a lot of work.

 

 

Due to her spina bifida Patricia does have a shunt and she also has mobility delays that may mean walking may not happen for a while longer. Currently Patricia is going through therapy with the hopes to walk someday. Her mother tells us she spends several hours up in her new braces every day and after a hard day of therapy she begs for more time up on her feet. Patricia is a beautiful, special and happy little girl. She’s polite and loving and has the best laugh. Patricia currently goes to a Prescribed pediatric extended care daycare program and goes through PT, OT and speech therapy several times a week. Though she may have a little more support and medical care than the average child, her family is overjoyed with the love she brings to their family. One things for sure, spina bifida isn’t going to stop this amazing little girl from doing amazing things.

 

 

SBACFL thanks Patricia’s family for allowing us to share her story. Her determination at such a young age is sure to inspire other families facing similar challenges. We love you baby girl…thanks for keeping us smiling!

Meet Dominick

Posted on October 14, 2012

Dominick, also known as “ranger Dominick” (because of his love for Walker Texas Ranger), is one tough kid. Enduring 32 surgeries due to having spina bifida doesn’t keep this kid from smiling. It doesn’t keep his mother, Angela Perkins, from smiling every day either. As a mother of a child with spina bifida, Angela says her life has been full of ah-hah moments, some awe inspiring moments and some of the most stressful and most joyous moments of her life.

 

 

As of October 2012, Dominick has went through a total of 32 surgeries since he was born and six of those have been in the past 11 months due to breaking both femurs at different times. Dominick is paralyzed from the waist down but that doesn’t keep him from doing amazing things. Angela reflects on her son, “As a younger child of 5 or 6 he would fight with his sister and pick up his leg with his hand and kick her!  He knew his legs didn’t work but he also knew he wanted to kick his sister!  He still says “I can’t walk….yet”.  Yet!  That is the tremendously positive outlook that this child has!”

 

 

When families first learn their child may be born with spina bifida they fear all the things their children or family may never do. Traveling with a child with spina bifida who requires a wheelchair may seem daunting to new parents but Angela tells us they’ve made trips to California, Texas, and New York and across various cities in Florida. Like all normal families they take trips to the park and the beach and the go out to dinner and even have went camping with the cub scouts one year. Dominick has ridden a horse, rode a bike (with hand pedals), and he continues to be a fun positive spirited young man. Despite all of the doctors appts, surgeries and scans, he just keeps smiling!

 

 

Angela tells us that Dominick is held to the same expectations as her daughter who does not have spina bifida. Dominick who is now in the 7th grade does chores and is an active part of his family. Angela reminds us, “Just because Dominick may have to do some things a little differently, does not mean he can’t do them!  The words that we live by in my house are “Failure is not an option”, the work can’t is not in our vocabulary so don’t tell me that you can’t, lets find a way to do it”

 

 

Angela Perkins is the 2012 Walk-N-Roll chair and Dominick’s team “Ranger Dominick” has been one of the top fundraising teams two years in a row. There’s no doubt the challenges he’s faced with spina bifida have influenced Angela to step up to make a positive impact on our spina bifida community in Central Florida. Angela & Dominick, SBACFL thanks you for being such an inspiration to us all. Yes, we know our spina bifida community needs more support…so “lets find a way to do it”!

Meet Aiden

Posted on October 14, 2012

Aiden underwent fetal surgery while his mother was still pregnant as a part of the MOMS trial study. His mother, Jamie Beers recognized early on that receiving the diagnosis was a terrifying and overwhelming moment in her life. Like most families they questioned “why us?” but they quickly understood that their family had the love and strength to support and nurture such a special spirited child.

 

 

Aiden was photographed as a part of our spina bifida awareness campaign in 2011 and is well remembered for the moments captured of him as he walked around with the support of his walker. Really, he runs around with it. He’s such a determined kid who surely keeps us smiling here in central Florida.

 

 

Aiden’s mother recollected the 1st Walk-N-Roll for Spina bifida in central Florida held in 2011 which happened to be a very rainy morning.

 

“The rain the day of the Walk-n-Roll was like raising a child with Spina Bifida. At times the wind and the rains are hard and you want to huddle together under a tent…other times it’s just a light drizzle and it’s certainly nothing that’s going to slow you down…but most of the time it’s like Florida bright and sunny! When we got the tent set up for the walk it poured but as the walk started the rain stopped and then slowly the sun came out!! We have been through many ups and downs with Aiden but the sun always, always comes back out and dries up all the rain!!”

 

 

It didnt’ matter that it was raining during the walk, Aiden was seen running around with his walker…all smiles.

 

 

The challenges Aiden faces due to spina bifida definitely don’t define him. He’s Jamie reminds us, “Children with spina bifida have a special light and resilience that could only come from above and they are here to share it with us!”

 

Aiden’s family recently relocated up north due to job opportunities and as we reached out to Jamie in hopes to feature Aiden as one of central Florida’s first little heroes, we reminded her that they’ll always seem like a part of our spina bifida family here in central Florida so we still wanted to feature him. Aiden, we’re sending you and your family lots of love…you’re one amazing kid!

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