Who do you do it for? We do it For The Kids, For the Families. Our year long effort of raising support, awareness, and funds is solely for them. They are the heart and soul of our cause and inspire us every day. Here is the Miracle Story of a special family who has been with Dance Marathon at UF for 4 years now.
Q: Tell us about your Miracle Child and your story?
A: Kendall, aka “Miss K”, was born a full-term baby with no known complications prior to her birth. The day she was born, in Ocala, she was found to have multiple congenital birth defects and they diagnosed her VACTERL Association. That was also they day she was sent to UF Health Shands and they became a part of our life. VACTERL Association is an acronym that is used as an umbrella diagnosis. This is not caused by genetics, it is simply a case of the short straw. They do not know what causes VACTERL. It is not common and the more aspects you have, the more rare it becomes. The V= Vertebrae/Spinal issues, she was born with half of an L4 vertebrae and she also has a tethered spinal cord. The A= anus, the opening to her bottom was not in the correct location. C= Cardiac, she was born with a congenital heart defect called Tetralogy of Fallot with Pulmonary Atresia. T= Trachea and E= Esophagus, she was born with her esophagus NOT attached to her stomach. R= Renal, she has a duplicated collection system on her right kidney with hydronephrosis. L= Limb….these kids can be born missing random bones, however this is the only component that she does not have. In addition to the above, she was also born with some complex lung issues as well as immune system issues.
She spent the first 7 weeks of her life in the NICU/CICU at UF Health Shands. Miss K had her first set of surgeries at 5 days old. They repaired her bottom and her esophagus. She had her first Open Heart Surgery at 26 days old, her second at age 3, and her third one at age 5. She has been in the operating room more than a dozen times. She is followed by 11 specialists at UF Health Shands. When you include all of her medical components of VACTERL and add her Lung and immune system issues…..the odds of having a child like Miss K is 1:1.5 million.
Q: How did you first get involved with Dance Marathon at UF?
A: We first got involved with DM at UF when Miss K had begun additional infusions to keep her immune system up just after her second heart surgery, when she began rejecting the new valve/conduit that was placed. We had been spending a significant amount of time in the hospital and she loved when the volunteers came to visit. She began to look forward to hospital stays so her “Big Friends” would come to visit. It was at one of those inpatient appointments that we were approached about joining as a Ambassador Family for Shands and then introduced to DM at UF and found out that a few of our favorite volunteers where affiliated with it.
Q: What’s your favorite part about being a Miracle Family?
A: Our favorite part of being a Miracle Family is being able to spread awareness, both for DM at UF, for Miss K’s diagnosis, and for UF Health Shands Children’s Hospital. I love that it has given my big kid an opportunity to be part of the spotlight. It has shown her that she is not alone with having a medically complicated sibling. I love how it’s given me an opportunity to see that there is hope for tomorrow with the next generation coming through. In today’s world there is so much hate, violence, and ugly. DM at UF makes our world SO VERY BRIGHT!! The people involved at DM at UF have touched our family in more words than can ever be expressed via words.
Q: If you could describe Dance Marathon at UF in one word, what would it be?
A: LOVE. The love I have for every aspect of DM at UF is unmeasurable. Our family has grown monumentally over the last 4 years of being involved. The people involved with DM at UF aren’t just friends to us, they are part of our family. They have seen us at our best and at our worst, and have never left our side. The alumni still keep in touch and let the girls harass them relentlessly even though they don’t need to. This is a group who have personally helped when in the most difficult of situations, especially over last fall when we needed familiar faces at the drop of a pin and in a very difficult time, were there no questions asked. I will never be able to put into words just how much that meant to my family or myself.
Q: What was your “Redefining Moment” within this organization?
A: Our redefining moment within DM at UF was probably with last years Overall Team. It was the summer of Miss K’s 3rd open heart surgery (Summer of 2016). The new Overalls had just been announced and many students were in and out due to summer break. The team really made an effort to come and keep K company after her surgery. This is the first Overall team that we truly became close to during the actual year (and not as they became Alumni). This is the same team who when things got crazy this past November when Miss K was admitted and my brother passed away suddenly, came to my rescue along with many of the current Overall/Captains for this year. Some of these people are in Med School now and they still dropped what they were doing and came to our rescue within 5 minutes. These are people who I trusted enough after getting to know them over last year/this year, to stay with Miss K who actually landed herself in CICU for 3 days. These are the kind of people who will forever remain in my heart. With each passing year, the team gets better and better, yet we still get to remain in contact with those Alumni as well. This, is why DM at UF will always be a part of our lives…and forever remain in our hearts.