July is Juvenile Arthritis (JA) Awareness Month. To help raise awareness of the more than 300,000 — or one in every 250 — children in the U.S. who are affected by some form of JA, the Lentini Family has shared the story of their son Parker, his battle against JA, and the hope they maintain despite all obstacles.
My son Parker’s journey with JA began 10 years ago when he was in elementary school. When he started displaying symptoms of intense pain, fevers, rash, extreme fatigue and bruising, we feared lymphoma, multiple sclerosis or leukemia.
It took us one year and seven months of trips to multiple doctors to even get a diagnosis, and it took another six months after that to get the correct diagnosis: systemic on-set juvenile idiopathic arthritis. Yes, arthritis. What is often associated with old age can affect children as well, resulting in inflamed joints that cause pain, swelling, stiffness and loss of motion.
JA is usually an autoimmune disorder, meaning that the immune system attacks some of the body’s own healthy cells and tissues. In addition to afflicting joints, JA can involve the internal organs of the heart, lungs, lymph nodes, brain, eyes and kidneys. Parker also suffers from a range of other autoimmune conditions, including psoriasis, asthma, allergies, kidney stones, alopecia and interstitial lung disease. Needless to say, after his diagnosis, doctors told Parker to avoid all contact sports, including skim boarding, jumping and skateboarding – all the things kids are supposed to enjoy when they’re young.
Parker visits 18 medical specialists throughout our state for treatment, and some of them practice up to 4.5 hours away. Parker has undergone countless surgeries, taken part in clinical trials and today he takes 28 different medications to help manage the pain and inflammation.
And yet, throughout all of this, Parker has been able to hold onto something amazing: his hope. There have been many times when he has talked about dying and going to heaven to escape the pain, but Parker has maintained the hope that there will be a cure for JA and that children like him will never have to endure such terrible suffering again.
With every birthday candle blown-out, cake cutting, shooting star, fallen eye lash, coin thrown into a well, 11:11 and dandelion blown, the wish is always full of this hope.
Through the endless treatments, needle sticks and procedures, we have found solutions. Through the ongoing pain, we have found strength. Through the physical barriers and road blocks, we have found alternate paths. But the greatest thing of all is the love and support we’ve received over the years from our community.
To those who have supported us, cried with us, laughed with us, and loved us, we invite you to continue the fight today and every day. To the researchers who have dedicated their careers to examining arthritis so that we can strip it apart, find a cure and rid the world of the needless suffering it causes, we are eternally grateful.
I know one day we will find treatment for JA. Until then, we continue onward, empowered by the profound hope that this journey is worth pursuing, and that it will end in a cure.
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