Living with JM
The Real Life Stories of Cure JM Families
Turning Worry into Action
A family’s path from despair to taking matters into their own hands.
“Carry me Daddy!” pleaded Parker, my 4 year old son. I bent down and obliged with a mix of annoyance and concern. The request, enlisting me as his source of public transportation, was becoming much too frequent. My experience with our first son, Connor, was parents are usually running to keep up with 4 year olds. However, I assumed Parker was just displaying a renewed clinginess resulting from his newborn brother, Cole. It all made perfect sense to me; Parker was just jealous that his new little brother was getting a greater share of the family’s attention, having a monopoly on being carried by Mom and Dad. Ironically, I came to realize over the months ahead that Parker was not being clingy. Instead, he was gradually being crippled by a rare autoimmune disease, called Juvenile Dermatomyositis.
Flash forward 5 months, my wife and I were at the Emergency Room at Children’s Hospital , carrying our limp son who could no longer walk, stand-up or lift his head if he was lying down. Several visits to our pediatrician yielded little help. Not even knowing the specialist to recommend – Neurology, Rheumatology, Immunology – our pediatrician threw in the towel and told us to hit the ER. Later we would understand that the pediatrician’s inability to make a diagnosis is regrettably common, as most pediatricians will never see a case of Juvenile Dermatomyositis (JM) in their careers. What had been the gradual onset of JM was rapidly becoming an aggressive flare-up of the disease. After visiting the ER, we were connected with a Pediatric Rheumatology Specialist who verified Parker had JM with an MRI and muscle biopsy. The damage to Parker’s small and once healthy body was extensive.
The weeks that followed were an extremely bleak time for our family. We learned that inflammation is a very standard autoimmune response. However, because of Parker’s JM, this autoimmune response was not shutting off and it was destroying his muscles. We learned that approximately only 5,000 cases of JM are in the United States; about 2 to 3 per million children. We learned that some children with JM will go into remission, some children will battle the disease on and off their whole lives and that some children will suffer from crippling side effects, even death.
Yet, what we learned most about the disease was that there was very little information about it. Information about what caused the disease, its treatments and prognosis seemed as rare as the disease itself. We could literally count the number of researchers investigating the disease on one hand. JM has the unfortunate distinction of being categorized as an “orphan” disease. This classification is given to rare diseases affecting only a small portion of the population. And while life-threatening or permanently debilitating, these diseases will never attract much attention from large drug companies because the market opportunity is too small. In the end, there is more money to be made by the pharmaceutical companies on more common ailments.
Fear and depression gripped our entire family as we kept searching for answers that just weren’t available. Parker’s treatment of heavy corticosteroids and chemotherapy drugs was administered in an effort to shut down his over active immune system, but never was there any talk of curing him. The drugs gave him the ability to walk again but we knew overtime, the drugs would take a tremendous toll on his body leading to osteoporosis or potentially cancer. Yet, we knew from the beginning that some children battling JM did go into a remission. Understanding the triggers that cause a disease and its remission are the first steps to finding a cure.
As we threw ourselves into the existing research on JM, the more we realized we could be the catalyst to finding a cure. Through the internet we began to make contact with other families battling the disease. Ironically, the person who helped us the most was practically in our own backyard. We had the good fortune of meeting a Vista grandmother named Harriet Bollar who had a granddaughter fighting JM. Harriet had personally contacted hundreds of families with JM children and she knew top doctors throughout the country working on research. Emboldened with the same purpose, we joined forces and started the Cure JM Foundation to raise awareness, support families and fund research into a cure for JM.
At the time, we had no idea of all of the benefits we would receive from starting a foundation to find a cure. Number one, it gave us huge satisfaction knowing that we were helping out other families just receiving the devastating diagnosis that their child has JM. Children who are diagnosed early, and who receive aggressive treatment, have a better chance of remission. Thankfully, we have helped many families connect with the right doctors immediately and receive the appropriate treatment which should lead to a better prognosis.
Through our network of families fighting this disease, we have learned so much more about the disease and how to handle the day-to-day set-backs, navigate the health care bureaucracy and manage the side effects of the drugs used for treatment. We’ve nicknamed the mothers who are connected with our foundation, “Mother Tigers”, as they will fight anyone who stands in the way of their child receiving proper treatment.
Finally, the Cure JM Foundation has provided countless family, friends and neighbors a way to help. We have learned that people truly want to do more than just lend a sympathetic ear. We have helped create grassroots fundraisers all over the country, raising almost $500,000 for JM research. One of those fundraisers will be on May 25 when Parker’s school, the Saint John Catholic School in Encinitas will be holding a student jog-a-thon. We are blessed to receive this type of community support; as it raises money for a cure and increases the public’s awareness of this rare disease.
Parker’s prognosis remains unknown. We remain hopeful that he will be one of the cases of JM that goes into remission. In the meantime, we’ll keep spreading the word about JM – working toward our ultimate goal to never let another child suffer from this rare disease.
Submitted by Tom Hume.
Tom and his wife, Shari, live in Encinitas, CA with their 3 sons; Connor, Parker and Cole.
Body, Mind and JM
“Movement is assertion...”
I am going to write about mind-body relationships, something I studied a lot in my early years as a dancer, movement educator and psychotherapist and to which I seem to have been guided back towards with Flora's illness.
A quote from a dear friend, Louise Steinman in her book, The Knowing Body, “Movement is assertion, and assertion is one of the primary acts of the mind.”
Why this quote? Over this past weekend we spent 3 days at our land in the Methow Valley. It has been a place we have gone to for the past 3 years as a family, over Memorial Day weekend. We have gone with friends and there have always been at least 2-4 other kids around. 2 years ago, before Flora was diagnosed but after almost a year of living with this progressive disease, she would not leave my side to play with others. She complained about walking up or down a hill, she was shaky in her body, in her approach to the world, and much of her behavior and moodiness was not understandable to me at the time.
Some friends of ours who live in the Methow came to visit that weekend with their horses. Flora said she didn't want to ride the horses. I told her she didn't have to. When they arrived, she ran into our little trailer screaming and wouldn't come out. I had to coax her out and hold her on my lap and even then she could only tolerate being in their presence for a few minutes.
Last year at this time, she was 4 months into treatment and in a lot of pain. She was very withdrawn, barely able to walk. Sleeping and getting in and out of bed or to the outhouse was excruciating. It wasn't much fun for her or any of us either.
A week ago Flora announced she wanted to try riding her old bike (the one without training wheels) and see if she could do it. We went to a basketball court near us to practice. She got a little of the balance worked out and was very excited, and determined to keep going. A few days later some ponies and a horse came to a fair in our neighborhood park and she asked to ride the horse (not the pony). She got on it and rode in a small circle led by another young girl. She announced she was afraid while on the horse, but I remarked she had done it anyway.
This past weekend, back in the Methow, our friends with the horses showed up again. This time Flora got on the horse, was led down a road and in more than circles, and wanted to keep going. Then she asked if she could take riding lessons!
She ran up hills, went off to play on her own initiative with the other kids, went all over the place walking, running, laughing (even to the outhouse by herself).
The transformation is a marvel. It is amazing to realize how wise her body is. Though it was painful for us to see her becoming so timid and afraid at 4 1/2 after having been so strong and sturdy, and to watch helplessly as she got weaker and weaker and even after diagnosis to see how far inside herself she had to go to tolerate the pain and immobility, the effects of the drugs on her moods and spirit, she instinctively knew what to do to protect herself. And now to see her running, laughing, initiating activities and her courage in doing things that scare her, I say her body/mind also knows what she can handle.
I have to believe that her body and mind worked together in both the disease process and the healing. Without one, her physical strength and health, she didn't have much of the other, her joyous, courageous, Pushing Forward Into Life spirit either.
I can't fully comprehend the intrinsic bond of mind/body/spirit, I just know personally and again in watching my girl struggle and grow, they are always connected.
Submitted by Suzanne, May 26, 2008
Mom to Flora, DX January 2007
My Body Has Turned Against Me
My body has turned against me and is showing signs of disease. I’m scared and I don’t want to show it. If I tell you what’s wrong, then you’ll be scared too and I need someone who knows how to be strong. Don’t talk to me like I’m a baby or coddle me with your words. When you do that I want to become helpless or build walls to make me look strong. Don’t tell me about God’s plan. My relationship with my Heavenly Father is stronger than you’d guess. I know I can be angry with Him and he'll love me just the same. Don’t tell me it could be worse and point out examples. I could do just the same about all those who have it better than me. Don’t tell me what doesn’t kill me will only make me stronger because sometimes I want to be weak. Don’t think you can cure this with this thing or that because I’ve tried hundreds of cures and I’m still here with this thing. Don’t catastrophize this, don’t make it sound like I’m dying, don’t pretend like this isn’t happening. Be real with me, speak to me and tell me the truth. I know you’ll be clumsy and won’t know what to do. I need someone who can laugh and cry because they are scared too. I won’t ask you to sit with me because it seems like too much. If you volunteer and do it without question, you’ve joined me on the path of true friendship. When I’ve shut myself in and hid from the world, I need someone who knows how to build forts. I need someone who can do more than read my mind. I need someone who can read my heart. I won’t ask for what I really need because I don’t want you to feel obligated to walk the path that I'm on.
Submitted by Chy