Last year was our first experience at Camp Sunshine! Before arriving we had no idea what to expect but just knew that this was our first getaway since treatment which totaled 3.5 years. Our only son was diagnosed at age 9 with a rare form of leukemia called Philadelphia + ALL. Like many, treatment was brutal, long, exhausting (mentally and physically) and we knew we desperately needed a break and to getaway! Once learning about Camp Sunshine we immediately applied and were accepted right away. We had no idea what we were in for. Once arriving to camp we were totally taken away...away from the sickness, away from stress, away from fear, away from the hospital and away from confinement. We were instead now at a place of serenity, fun, joy, peace, understanding and had our every need taken care of. We needed this more than words can express!! Camp Sunshine is a Camp filled with light and if you've never experienced this incredible place please trust me you will not regret it. This isn't camping in tents, eating outside over fire pits and worrying if big creatures will attack at night....this is a resort of sorts where you have a spacious family suite, 3 meals in the meal hall, parent time while your kids are enjoying a full camp experience with every outdoor and indoor activity you can think of, family time, entertainment every evening, parent discussion groups, sibling group and volunteers that are beyond exceptional that care for yours and you children's every need!!! I can't say enough. I thank you Camp Sunshine for not only bringing my family joy and peace but to all the families you service every year....we are forever grateful.
At the age of two our son Banning began complaining that his stomach was hurting. As new parents we immediately thought his stomach might have been upset and his discomfort would pass by the next day. As the next morning arrived, Banning woke up in severe pain and was curled up into a ball and crying in pain. This concerned us greatly and we raced Banning to his pediatrician to find answers. Leaving the office we were convinced the discomfort would pass and was an isolated incident. The days and months that passed saw Banning’s pain intensify and his discomfort was so great he was refusing to eat and drink. Without proper nutrition he began to lose weight. Working with our pediatrician we made appointment with specialists in the areas of gastroenterology and infectious disease to find answers. While the stomach pain continued Banning began to have fevers which would spike in a matter of minutes to an alarming 104.5. The fevers were unfazed by Tylenol and Ibuprofen and we were unable to reduce his temperature without a visit to the Emergency Room. Banning was also prone to becoming sick with frequent colds, ear infections and even a rare case of giardia (normally found in third world countries). While illness in children is common, Banning was unable to fight off the illnesses quickly and took weeks to recover from a simply cold.
The months that followed were some of the most difficult and stressful my husband and I have ever experienced. Banning was now averaging 4 doctor’s visits and two trips the Emergency Room each month. Still no answers to why he was experiencing these severe episodes of stomach pain and cyclical fevers every twenty one days. His Gastroenterologist performed an exploratory scope of Banning abdomen to determine if there were any abnormalities. The scope raised concerns in Banning’s pancreas and the specialists spoke with us about the possibility that our son may have Cystic Fibrosis or Schwachman Diamond Syndrome, both debilitating diseases which attack the body’s vital organs. Banning was immediately placed on Creon, a drug used in cystic fibrosis patients, to help absorb the nutrients of the food he was eating. As there are no generics available for this drug, the prescription costs exceeded $800.00 for a month supply. This was a financial strain on our family, but the cost was minimal in contrast to our son’s continued health.
The episodes of stomach pain continued, although less frequent in the months that followed. It became apparent that this illness would not be diagnosed without seeking the help of a pediatric specialist outside of Orlando. After many long hours of research we were directed to the University of Florida Shands Children’s Hospital Hematology and Oncology Department.
After a six week period in which Banning’s blood was drawn twice a week, we had collected data which lead to a diagnosis on neutropenia, an abnormal reading of neutrophils (a type of white blood cell whose function is to fight off infections by destroying bacteria). While this was encouraging and seemed to explain the frequent illnesses, it did not explain the frequent stomach pains Banning was continuing to experience. The Hematologist recommended we seek the guidance of the Pediatric Gastroenterologist at Shands.
We were placed under the care of Dr. Christopher Jolley, Chief of Pediatric Gastroenterology, Hepatology and Nutrition. Banning was given an MRI of the abdomen (pancreas) to determine if it was functioning properly with manipulation. Following these results it was determined that, in fact, Banning’s pancreas was not absorbing the nutrients of the food he was consuming and a diagnosis of pancreatic insufficiency was recorded.
We have been given a clinical diagnosis of Shwachman Diamond Syndrome. Immediately I contacted Camp Sunshine because we had heard of the SDS week. There we met families with similar stories to ours. Also, it was great to be able to connect with those families who "understood" our situation. Our family has made forever friends through Camp Sunshine. We cant say enough about Camp Sunshine's positive impact on our lives. We are forever grateful.
My family went to camp with my brother while he was sick and we have continued going to bereavement sessions since his passing. Recently my parents have become volunteers and I look forward to doing the same when I'm old enough. Camp is an amazing place that has done so much for my family, and I have made friendships with both the other teens and volunteers that will last a life time.
Camp Sunshine is spectacular, has a caring staff, amazing volunteers and was a wonderful experience for our family this summer. It was our first visit and we hope for many more. Here is our Millie with Meghan and Kim, two volunteers that made our week memorable.
Camp Sunshine is an amazing place for our family! It is a place filled with joy and happiness. Our children forget their illness and play with other kids that completely understand them. I get to be with parents and doctors that support me in our journey. Camp Sunshine is our home away from home!
My daughter and I were blessed to be chosen as a family to visit Camp Sunshine. Thank you doesn't even begin to express the amazing week they gave us. The smiles, the laughs, the bonds of friendship we made. For my daughter she got to be with other kids who have been in her shoes. She got to play, and have fun, and just be a kid.
For me, I got to see and meet some awesome mom and dads that do what I do every day. Give our kids the best life possible. Some days are harder than others and Camp Sunshine let us just live with no stress !!!
We met some of the most amazing young adults that were the volunteers that gave us their time and let us be part of their lives for our time at camp, as well as brighten our lives forever.
My daughter is still talking about camp and cannot wait to go back next year.
Thank you to all!!!!
We can't say enough about how much we LOVE Camp Sunshine. Camp gives us the opportunity to feel normal and speak freely. It has allowed both our child to feel special, not just our brain tumor child. Camp has helped our family tremendously. GO CAMP SUNSHINE!
Being able to attend camp has changed the course of our son's treatment. Being able to connect with others that have a similar journey and sharing information, love and laughter has been a gift during some uncertain days. As parents we never fully realized the impact a medical journey has on the entire family. More specifically the impact on the siblings. Camp is a place where we can let down our guard and not have to explain that things will never be "fixed" or "cured". Camp is a place to smile and have hope and optimism. We are greatful for the experiences, especially our one on one volunteers that are now part of our family!
Our 5th child was born with hypoplastic Left Heart and Hypoplastic Kidneys. In his first 2 years of life he required 3 life saving open heart surgeries. Our nephrologist recommended us to Camp Sunshine for our family. The vacation was an experience like no other. We had been wary of heart transplants, deciding that God would guide us and our decisions. We had gone for their kidney week and was surprised when we got there that due to a maintenance issue solid organ transplant week was joining us. The first 2 families we met were post transplant hypoplastic left heart families. We could not tell the "sick" kids from the siblings..in that moment we felt God giving us direction we had been seeking and are forever grateful for the experience. Our daughter is 16 and does much babysitting duty. When we explained what kind of vacation we were going to have,one where she would not have to watch the boys for one minute her reaction surprised us...she cried for joy. We really did not understand how much we rely upon her and depend on this sweet girl to help hold our family together. Thank you for giving her a week of normal back!
Our family first attended Camp Sunshine five months after my daughter, Mary, died from hepatoblastoma, a rare liver cancer. The services offered by Camp Sunshine and the connections we made at that session and all subsequent sessions have been a LIFE LINE for our family as we wade through being a bereaved family. I highly recommend Camp Sunshine to any family that is struggling with pediatric cancer and bereavement.
After our precious daughter was taken from us by cancer, our family struggled with day to day life. We attended Camp 6 months after she passed and it was like a breath of fresh air. There aren't many programs that assist families in treatment as well as bereaved families. We will be forever grateful for the love, compassion and support we have received from Camp Sunshine.