Those of you who have been blessed to meet my little sister, Natalie Gravitt, know the joy she brings to others without even trying. Her selfless desire to see you smile, to make you know how it feels to have someone love you unconditionally is enough to make you wonder whether she might be an angel sent from God. It is safe to say that we who have felt the warmth of the light she consistently shines into our lives with her childlike spirit want nothing less than to give her the world.
￼Although frequent long-term hospital stays and overnight visits to the emergency room sometimes get her down...
￼...she always comes back with a smile. In her most recent hospital stay, she beat me (again) at our favorite boardgame: Clue.
As her big brother, I can say that it's a great pleasure and an undeserved privilege to have a best friend like her whose smile and heartfelt laughter are like little rays of sunshine brightening even the darkest of days, reminding me that it's the simplest things in life that are most important. The memories of all the hours we ve spent together watching Disney movies, playing Clue or Battleship, or singing karaoke have been enough to bring me joy and peace at even the most difficult times. To protect and uplift her, I've done all I know how to do as her big brother and return some of the joy she has shared with me. When she becomes discouraged by her medical condition, I assure her that I'll always be by her side to guarantee everything will be okay.
<iframe media_type="0" media_id="uaH8Lwep-Z0" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/uaH8Lwep-Z0/?rel=0" frameborder="0" allowfullscreen="1"></iframe>On a recent occasion when she was feeling discouraged, Mama and I had a karaoke-and-dance night with her to cheer her up. She didn't know it, but she again brightened up our lives that night as she chose to embrace the moment God had given her, to dance and rejoice even in spite of all her overwhelming physical pain.
The rapid decline in health she has suffered recently, however, leaves me fearing for her future, uncertain that I can truly guarantee everything will be okay. As her big brother, I'm asking our community to help me and my family give Natalie the hope of a healthier, brighter future.
￼During her most recent hospital stay, her headache was so intense that she could barely even stand the light.
Natalie has been a patient of our local Children's Hospital since 2003, the year she underwent surgery to have a total removal of a craniopharyngioma tumor, a rare kind of pituitary tumor that affects children more often than adults. The unfortunate reality is that the survivors of childhood craniopharyngioma invariably suffer from both long-term and late-term side effects. Although they pose a serious threat to all craniopharyngioma patients, the late-term effects pose an even greater threat to those who, like Natalie, receive the diagnosis and have the cancer removed in childhood.
Although we're grateful to say that her doctors at Children's Hospital have helped her manage the long-term side effects since her journey began, we are now at a point where they can no longer treat her due to her age. In mid-June of this year, they discovered she is sufferering complications of the heart and lungs as well as possible recurrence of the tumor, late-term effects that can be very serious if they're not immediately treated. The most they could do for us was stress the urgency of her situation: They said that her heart had become at least twice as large as it was in September of 2016.
￼Natalie hugs one of her greatest heroes: her endocronologist, Dr. Latif.
Even though they could not treat her, there is still one hope: Her endocronoligist, Dr. Hussein D. Abdul-Latif, who has always provided her with the greatest care and helped save her life on more than one occasion, has procured an appointment for her on July 17, 2017, at the Mayo Clinic in Rochester, Minnesota. That initial visit will require Natalie and my mom to be there for at least a week. In that time, Natalie will see a team of doctors who specialize in treating adults suffering the late-term effects of childhood craniopharyngioma.
￼During her final long-term stay at Children's Hospital, Natalie looks out of her window at the world she wants to help make a better place.
Regarding what we know about why heart may have become enlarged so much at such a rapid pace, we can only guess it might be acromegaly, but we still don't know for sure whether that is so, and thus we don't know what kind of treatment we should expect doctors to administer. What we do know is that any treatment option and all prescription medicines will be expensive regardless of what the doctors find. Besides the medical expenses, we have to account for the costs of food, lodging, and traveling back and forth between Alabama and Minnesota not only for the initial long-term visit, but also for all follow-up visits. The traveling and lodging expenses alone are enough to accrue a considerable amount of debt, so the more money we can put back as a safety net, the better.
If the Mayo Clinic doctors give her clearance, Natalie also wants to attend an annual picnic in California where a group of craniopharyngioma survivors meet to share their own experiences with each other and develop a network of friends who understand each other like nobody else can. The cost of attending is steep, but giving Natalie the opportunity to meet others like her who understand the pain she endures daily is well worth the investment.
￼Natalie and I say goodbye when it is time for me to go home during her most recent hospital visit.
All of us who have had the privilege of knowing Natalie know that she has many people who love her and want to have her with us for as many years as possible. While we have her here with us, we also want to ensure she gets to enjoy a good quality of life,
a gift that many of us healthy folks often take for granted. Please, help us repay Natalie for all the joy, love, and hope she has brought into the lives of countless people. You can help us achieve this by contributing to the funds required to ensure she receives the best treatment available to her.
We appreciate whatever you can contribute, and we promise to post regular updates on her condition as we continue to learn more.
￼ "Heal me, LORD, and I will be healed; save me and I will be saved, for you are the one I praise." (Jeremiah 17:14).