My Grandson, Jackson aka Jack, to me is a 17 year old, very typical teenage boy. He is a senior this year at Eureka high school. He was very involved in many sports – soccer, basketball & volleyball. This last year of school he has decided to drop sports and focus on getting through high school.
Jack was diagnosed with JM around the age of 12 – 7th grade. He was having some painful muscle pain which we attributed to “growing pains.” He grew several inches that year. My daughter in law, a nurse practitioner, took him to his pediatrician. He also had some small patches of bumps on knees & nail beds.
The pediatrician didn’t exactly know what to think but immediately recognized it was unusual. He suggested Jack go to a rheumatologist, which he did. The rheumatologist had just read something on JM & recognized Jack could have it.
After consultations, we were fortunate that all Jack’s doctors consulted & agree on his treatment – he had JM & MD5 (a rare lung disease). It took a while to get treatments started. It was a bit of a rocky journey starting out. So much was unknown.
Our family had no idea about what JM was. I would highly suggest to DO NOT google it – I’ll be honest it freaks you out. But thank goodness we found Cure JM & started quickly learning that it was not as dark as google said. My daughter in law and her research helped tremendously & we eventually came to the reality we need to learn more. – Cure JM to the rescue.
My daughter in law contacted Cure JM for more information but as a Grandparent, I felt helpless. I looked into what programs JM had to offer grandparents. I contacted them, which was one of the best things I could of done.
I called in for the zoom calls only to learn many kids have JM. Jack was one of the older kids when diagnosed at 12 – most are much younger & some in much worse shape, especially the younger ones. Some could not walk & had no muscle strength.
Those calls, even though frightening, made me recognize the progress Cure JM has made in the last several years & is very hopeful our grandkids continue to be informed thru Cure JM & share the info you learn with your family & grandkids.
Things are different now than even when Jack was diagnosed. JM is manageable & possibly cureable in the future.
Don’t let our kids give up.
Terry
Grandmother (aka Maw Maw) of Jackson, age 17 – a courageous young man.
