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SUNDAY, May 21, 2006    

Family takes matters into own hands

TOM HUME
For the North County Times

"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 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.

 

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 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 with an MRI and muscle biopsy that Parker had JM. 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. We learned that some children with JM will go into remission, some children will battle the disease on and off their whole lives and some children will suffer from crippling side effects, even death.

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.

Juvenile Dermatomyositis 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 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. (www.curejm.com).

At the time, we had no idea 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 May 25, when Parker's school, Saint John Catholic School in Encinitas, will hold 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.
 

Tom Hume and his wife, Shari, live in Encinitas, with their three sons: Connor, Parker and Cole. Shari is president of the Cure JM Foundation and Tom is on the board of directors. For more information, visit www.curejm.com.