Juvenile Arthritis Families | Finding Support In Each Other
The doctors freely pass out my phone number to all of the parents. I work hand in hand with the physicians. Our group would not be what it is today without the pediatric rheumatologists at Randall Children’s Hospital. They are beyond fantastic.
My daughter is 26 now. Most of the juvenile arthritis families in the Task Force today have never met her. My co-chair, Erika Cox, has heard the stories about Marian, but has never met her. I first spoke with Erika the day her daughter, Charlotte was diagnosed. She called me immediately after diagnosis when Charlotte was not yet two years old.
My daughter is probably the sickest child in our group. She is a systemic juvenile rheumatoid arthritis child who has never been in remission. It is usually the parents of the sickest children who are the most passionate. I say usually, but it isn’t always the case. That is my analysis of things after dealing with the disease for the last 16 years and co-chairing a support group for the last 11 years.
And the best advice I have ever received about forming a support group was to keep it independent of any foundation or group, so that is what I have done.
We at the Arthritis National Research Foundation hope that Cindy Price’s story about helping juvenile arthritis families will inspire other parents in other states to do the same. It takes passion; it provides hope.
This year the kids and juvenile arthritis families will have another chance to meet with not only one, but two LPGA professionals. ANRF Board Member, Kristy McPherson and Cure Arthritis Ambassador, Mallory Blackwelder, will be spending the day with JA kids and their families at the 2015 Portland Classic. For more information on this opportunity please contact us as space is limited.