Children and Arthritis

Having arthritis as a child is always painful, sometimes crippling, and occasionally fatal, and is expensive and disruptive to families. Most people recognize arthritis as a disease of the aging, but it affects over 300,000 children nationwide. Early diagnosis is critical to prevent long-term joint damage. Medications can cost up to $200,000/year and the divorce rate in families caring for a child with a chronic illness is 75%. There are only 200 pediatric rheumatology specialists in the entire US, often requiring travel and missing school/work for doctor appointments. Managing a chronic illness takes a toll on the entire family.

We help this often-overlooked group by providing access to pediatric rheumatologists and other physicians at an annual camp for the diagnosed child, parents, and siblings.

Impact:
Because managing a chronic illness impacts the entire family, we address the needs of the child, the siblings, and parents/guardians. The next Camp Jambalaya Jubilee will be June 16-18, 2023! One family has attended camp for 14 years, a true testament to the success and benefits of camp.

At camp, children participate in special needs accessible recreational activities. Parents meet with doctors to learn about the latest medications and treatments and have small group sessions with family therapists. Families come to camp often broken, distraught and overwhelmed but leave armed with more knowledge and a stronger support system.

Children are excited to share experiences with peers who understand how they feel, both physically and mentally, so they don't feel so isolated.

Parents meet in small groups to ask questions and learn about medical breakthroughs with top pediatric rheumatologists from around the country, dentists, orthopedic surgeons, ENTs, nephrologists, cardiologists, hand surgeons, ophthalmologists, nurses, physical therapists and occupational therapists.

Families have tough conversations and address underlying issues in sessions with family and marriage counselors. The child often feels scared and alone. Siblings, lacking attention, are resentful of the sick child and often act out. Marriages are strained by the physical, emotional and financial demands, and divorce occurs frequently.

Families meet and bond with other families enduring similar struggles. Recreational activities are designed to stimulate conversation between families. These relationships have proven to be an ongoing support system for both parents and children.

Camp Jambalaya Jubilee educates, encourages and empowers these families.

Testimonials

"What a blessing this camp has been to hundreds of families. We will never forget the blessings and memories made year after year!" -NCC

"Camp Jambalaya Jubilee was exactly what we needed. This was our first year attending and it will not be the last! Words cannot express how I feel. It was amazing getting to know other parents that understand. You all did a great job." Love, LaSheila Y. & Jimirrial C.

"To say that Jambalaya Jubilee is important doesn't begin to tell the story. Jambalaya Jubilee is the reason we are not only surviving but thriving in the wake of our arthritis reality. As a parent you shouldn't have to face injecting your child with medicines weekly, sit by and watch them receive infusions monthly, drive an hour twice a week for physical and occupational therapy, or advocate for your child's educational rights but that is what we face as parents to a child with arthritis. Jambalaya Jubilee hasn't taken this reality from us or sheltered us from these hardships but it has provided us with a support system to lift us up when life seems to be trying to hold us down. It has provided us with knowledge and information to improve our treatments and outcomes. And most importantly it has allowed us to do it with dreams and hope for Parker's future." Sincerely, Nicole C.

"All I can say is I never feel like we belong in this world. I'm a single mom that divorced when he was three because my husband at the time could not handle his diagnosis...Eight years into this diagnosis I realized I never really dealt with the emotional toll it has taken on my family. This weekend gave me the opportunity to tell my story and feel those needed emotions. I finally was in a place I could let go and receive comfort and support from people that understand. I finally was able to have the melt down I needed and people to support me. I shed so many tears this weekend for so many reasons. When the weekend was over I was thanking God that he chose me to parent a JA child. I found hope and love at Jambalaya Jubilee." Sincerely, Brandy L.