Growing up with Urea Cycle Disorder, diagnosed in the late ‘90’s, I thought I was the only person on the face of the planet with this strange rare disease. Believing that I was all alone in the world and most likely, an alien misplaced on this planet. That feeling carried on into my developing years causing pain and suffering along the way. I spent many years depressed. Feeling like no one could or ever would understand my point of view or my plight of daily life with UCD.
Therefore, when I found out about CFUCDF Family Camp I was ecstatic. “A camp just for kids with UCD? I am in! Where do I sign up?” I eagerly packed my bags and was ready to play with all the other kids. Ah shucks, it dawns on me that I am 31 and no longer a kid. There is probably no place for me at this camp, but curiously, I still inquire. CFUCDF quickly puts my mind to rest, “This camp is not just for the children who are affected. It is for the whole family. Moms, Dads, Grandparents, Siblings & Spouses.” As a result, I start to make my travel plans. Then came the best news of all: CFUCDF makes sure that this camp is completely FREE to UCD affected families. “No one pays a dime. The travel is covered. The lodging is covered. The food is covered. ” CFUCDF took care of all my travel arrangements and sent the itinerary to me.
The weekend of camp came quickly. After landing in San Diego, CA, I made my way to the pre-arranged meeting spot for all attending families traveling by way of airplane. We then all loaded into a charter bus that drove us to the camp location. Looking out my window watching the beach fade away into the distance as we made our way into the California Mountains. I started to see deer and the most beautiful plush green trees; I knew we were getting close to Camp. My excitement grew with every passing minute. The hiss of the charter buses brakes loudly stops conversation on the bus as we all pile out. WE ARE HERE! Dispersing we all pick our cabin from the five cabins available, each with five rooms in them. Each room with six bunks. Plenty of room for each family to have a private room if necessary.
Separate Boys & Girls washrooms with showers in each cabin. Mini fridges supplied in each cabin for medication. An excess of low protein snacks and sugary drinks in every cabin. As well as the supplied pillows and sleeping bags for every camper.
CFUCDF thought of everything and all my usual traveling with UCD worries and issues disappeared. They even had an on-site UCD specialist; this year was the beloved Dr. Juan Camacho. The dinner bell rang and weary travelers flocked to the mess hall where a menu of low protein baked potato bar with salad bar awaited us. YAAASSSS! I think I ate two whole potatoes in true UCD patient fashion. The
conversation, introductions and meeting all the families that traveled to camp by car gave dinner that cozy family reunion vibe. During dinner, annual shirts and reusable water bottles are passed out to all attendees. Dinner ended with the optional guided night hike with camp stories, which was the perfect way to end the first day at camp.
The next two days were non-stop fun. Days filled with human foosball, goose ball, tetherball, soccer, hikes, BB gun range, candle making, archery, face painting, paintball slingshots, canoeing, a rock wall to climb, campfires, s’mores, and so much more. The adults are invited to attend an informative lecture by Dr. Camacho. Horizon Pharma came out with information from www.ucdincommon.com and the
“RAREIS” photo booth.
My favorite detail; THE FOOD! The meals were scheduled, provided and delicious. Appropriate Low Protein options for every meal. Salad bar, potatoes at every breakfast, pickles and a special low protein dessert option at every meal. Anyone with UCD will tell you eating out and traveling with food is a jam. We often go hungry for the lack of options or are stuck with the same boring fries and a salad. So the fact that I did not have to even think about the food and I got full at every meal was so special to me. CFUCDF was thoughtful in the meal planning and I appreciate that.
For not only myself but also many of the families attending this camp it is their first time meeting another family or person affected with UCD. Others who are going through the same journey. Having someone else understand the same day-to-day life. Getting the face-to-face interaction with Facebook friends that sparks an immediate bond and lifelong friendship. This was no more evident than in the make shift mom staffed nurses station that created out of necessity to keep UCD kids safe and healthy. Moms taking turns to stay indoors with the kids needing heat or activity breaks, sugary fluids passed out and everyone making sure everyone took their medicine. There were no “What are you drinking?”, “Why do you take medicine.” Just zebras looking after the dazzle.
The two days went by fast, as I sat on the sidelines taking one last moment to enjoy in all the fun before we left for the airport. I watched as my daydream of children with UCD playing together come true. A family member interrupts my thoughts and asks, “So now that you are grown. How do you feel about having this camp for the UCD kids to meet each other?” A perfect question. Trying not to cry I responded. “I could not be any happier! I am at peace knowing that through CFUCDF no child will ever feel as alone as I did 20 years ago.” CFUCDF Family Camp is a blessing and truly incomparable to any other rare disease experience. I look forward to attending next year.
Lynzi Russell is a Urea Cycle Disorder patient who has a heart for bringing awareness and advocating for the UCD community. Her experiences in transitioning from a young person at home to independent living make her a valued resource on this topic. She is truly an appreciated zebra, and a valued resource for our transitioning teens who are considering independent living as well.
Lynzi Russell – Rare Disease Patient & Leader