A blessed event happened on January 14th, 1992, Leah Pullin Kuykendall was born. Her parents, Kevin and Terri, welcomed their daughter into this world with joy and excitement. She would be joining her two older brothers, Josh, who at that time was 10years old and Hunter who was 2 years old.
Six weeks later, this family’s happy world was shattered when their beautiful baby Leah was diagnosed with Cystic Fibrosis. Cystic Fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that lead to lung damage. There is no cure for Cystic Fibrosis and most patients only survive into their early twenties without a lung transplant.
The family was determined not to let this disease overtake the gift of life that this precious child was given. For the first 15 years of her life, it was pretty normal for a CF patient, she took her pancreatic supplement with every meal and snack she ate, her vitamins, 3 times daily aerosolized medicines that she would inhale through a nebulizer and after the nebulizer, airway clearance treatments. She was only hospitalized a few times during those years and there always seemed to be plenty of people to help with the daily treatments. Between her parents, her brothers, babysitters and neighbors, everyone was trained and always willing to give Leah what she needed to ensure she kept as healthy as possible.
Leah was like any normal kid with the exception of the treatments and meds before meals. She dabbled in almost every sport – recreational soccer, cheerleading and recreational basketball. She was on the swim team for Creekwood Neighborhood and Walton Lake and during her first years at Midlothian High School she played softball.
At the age of 15, Leah’s health started to take a small dip. Eventually, these small dips became more like huge scoops. She is 18 now and during the last three years she has been hospitalized on average five times a year with those hospitalizations lasting anywhere from one week to a month. She has also had to be on home IV meds and treatments increasing from three a day to four or more, making it impossible to go to school. At one point last year she was placed on a ventilator. Through it all, Leah persevered and met her personal goals of holding a job, driving her car, attending her Senior prom and graduating from high school (not a small accomplishment even for the healthiest of kids).
We are now at the present day where Leah is beginning the journey of receiving a double lung transplant. With this journey comes the reality that Leah will have to work hard to get her body and mind ready for this procedure and move away from her home for a minimum of six months from what we have been told. This also presents a whole new challenge for her family. Josh has moved back to his mother’s house to assist in making sure everything there is kept up. Hunter is going to be moving to Duke to assist his mother in being a caregiver (two must be listed) for Leah. Leah is blessed to have two older brothers who have never shown anything but support for their sister during her lifelong battle. They have risen to every challenge, supporting her and doing everything from running schoolwork, clothes and food to and from hospitals, helping with all treatments and just keeping her company on lonely days spent at MCV. They will now rise to this newest challenge and put their life on hold to ensure that they are there for their sister.
Another daunting challenge for this family will be the astronomical costs associated with having this lung transplant that are not covered by medical insurance. Many of the treatments and drugs that Leah will require to survive this transplant and ward off any rejection of the lungs are not covered. In addition to those medical costs, Leah and her caregivers will have to have a place to live in Durham, NC so that she can be available for all of the preparation and ultimately the transplant surgery and recovery. Her Mother will have to travel to and from Durham many times in order to be able to keep her job here in Richmond and most specifically keep the all important medical insurance.
When children with Cystic Fibrosis are first taught how to say the name of their disease they are told to say “sixty five roses”. Leah has tattooed a rose and the words “sixty five roses” over her left lung as this has special meaning for her.
In keeping with that, Leah’s Sixty-Five Roses Fund has been established to assist this family with the expenses of her surgery and recovery that are not covered. These expenses will include treatments and medicines that are not covered, living expenses, travel expenses and other incidentals necessary to make things easier for Leah as she goes through this process. A bank account has been established for this fund at Citizens and Farmers Bank - Varina Branch. Any and all contributions to this fund will be used for these purposes and for Leah’s benefit. Contributions can be mailed directly to -
Attention: Paula Tiller or Charlotte Thornton
c/o Leah's 65 roses fund
2651 New Market Road
Richmond, VA 23231
We ask that you take a deep breath (which Leah can’t do right now), reach into your hearts and pockets and give whatever you can to help make Leah’s dream of new lungs come true.
THANK YOU FROM LEAH, HER FAMILY AND FRIENDS
AND MAY GOD BLESS YOU AND YOUR FAMILY.
