Spina Bifida of Jacksonville Offers the Guidance You Need – Hear From Our Families
Sofia, now 9 years old, was born August 16th, 2006 to parents Elvi and Wilmer. When her mother was pregnant with Sofia, she was unaware that her unborn child had spina bifida. When they were given Sofia’s diagnosis, they embraced her as their little blessing.
Because her parents knew very little about Spina Bifida, they needed information and support. They found the guidance they were looking for in the local organization, Spina Bifida of Jacksonville.
“Spina Bifida Jacksonville has helped our family understand more about the condition, get to know other kids with Spina Bifida and interact with parents of kids with Spina Bifida.”
The family established a close relationship with Maria Quinones, a member of the Spina Bifida Jacksonville staff and a parent of a child with Spina Bifida.
“We are very thankful that we met Maria because she has been a great support to our family, especially Sofia. She has always accompanied us through our daughter’s surgeries, the Individualized Education Program and other events. That is huge for us.”
In spite of Sofia’s disabilities, she gets around very well. She speaks English and Spanish fluently. She also enjoys school much more than your average child. Her most inspiring quality is her positive outlook towards everything.
Spina Bifida Jacksonville’s support has a lot to do with Sofia’s continued success. In the words of her family “Thanks for all of the support and love showed to our daughter.”
Mathew was born August 8th, 2009 to parents Christy and Frank of Middleburg, Florida. At 18 weeks pregnant, Christy and Frank found out that Mathew had Spina Bifida. After a lot of research and prayer, they decided to participate in a clinical trial, in which Mathew would receive pre-natal closure surgery while still inside the uterus, at 24 weeks of pregnancy.
The surgery was performed at the Children’s Hospital of Philadelphia and after three months, while Christy stayed in a Ronald McDonald House near the hospital, Mathew arrived. After just one week of observation, Mathew was released without any complications. Since then he has received physical therapy weekly and is maturing into a sweet, outgoing little boy. His family says “Through this year and a half long journey, there have been numerous people that have touched his life, all in an effort to help Mathew have a normal childhood. He is truly blessed.”
Christy and Frank learned about Spina Bifida of Jacksonville from their OBGYN. They decided to get help from Spina Bifida Jacksonville because they thought they would benefit from the experiences of other families. That has proven to be the case as Spina Bifida Jacksonville has provided them with just that. They have also created an atmosphere that makes Mathew and the other children feel special and welcomed.
Five months into her pregnancy, Diane learned her child had a birth defect called Spina Bifida. Just eight days after she was born, Delaney underwent surgery to close an opening on her spine due to a myelomeningocele. Diane and her family had hoped this first surgery would be the one and only, but it proved only to be the first of many. During a routine checkup at 9 months of age, Diane was informed her daughter would also need to be catheterized regularly to fully empty her bladder, due to nerve damage, a common effect of SB.
Delaney, now 19 years old, has 18 surgeries behind her. She has had a tethered (spinal) chord, an augmented bladder, a mitrofanoff, a cecostomy, scoliosis, more tethered cord, bladder stones on multiple occasions, and even had a toe amputated during her Freshman year in college. These are all symptoms that are directly related to her Spina Bifida. Nerve damage in her feet causes Delaney to wear a leg brace to provide her ankle with support that her muscles are not able to give, and hand controls in her car are necessary to maintain her independence. Her weakened leg muscles may have rendered Delaney unable to participate in some sports and activities, including using her feet to drive, but even with these physical limitations, Delaney is driven to live as any other young woman without Spina Bifida does, enjoying all the things many young women do, and aspire to do. She is an avid hunter and deep sea “fisherwoman” who regularly competes with her father, older brother and sister for best catch. Despite numerous hospitalizations, she graduated on grade and age level from Jacksonville’s renowned Stanton College Prep’s International Baccalaureate program with honors, and is currently a sophomore on academic scholarships in a highly ranked college in St. Louis, Missouri pursuing a career in medicine. While a significant amount of her time has been dedicated to staying healthy, she is currently a happy and healthy young woman pursuing her dream to become a pediatric doctor. This is why we love the slogan “Recognize my disabilities, but emphasize my possibilities!” Delaney may have Spina Bifida, but it doesn’t have her. Her family attributes a good deal of her good health to their 19 year affiliation with The Spina Bifida of Jacksonville, the wonderful community of doctors, health services and providers in Jacksonville, and the many friends they have made, learned from, and shared her journey with through the SBJ.