What’s Going On in My Life & How You Can Pray

Tommy at Ronald McDonald House

Unless you follow me on Facebook, you may not be aware that we’ve been battling an illness with my son for the past year and a half. He’s missed a year of school and it took us a full year to get a proper diagnosis. My son, Tommy, has Amplified Pain Syndrome – a type of Fibromyalgia. There are only 3 programs/hospitals in the country that treat his special form of sickness and one happens to be in Kansas City, which is just 2 hours from us.

After meeting with a ton of specialists a while back, my son got accepted into the special program to treat Amplified Pain Syndrome at Children’s Mercy Hospital in Kansas City. This program is effective and has an 85% success rate of getting kids back to a normal life, though my son is young for the program (11). The average age is 14.

For the past two weeks, I’ve been home with my two daughters and my wife has been staying with my son in Kansas City. We get to stay in The Ronald McDonald House. I left yesterday to return to Kansas City with my son and I’ll finish out the last two to three weeks here in KC with my son and my wife will be back home with our daughters.

This is an extremely tough time for our family and we hate seeing our son in so much pain. He does intense physical therapy from 7:30am to 4:30pm every day. It’s brutal and he can barely walk due his soreness. It’s like going on The Biggest Loser.

Please pray that God would strengthen, sustain and provide for us as a family over the remaining two to three weeks and pray that God would fully heal my son Tommy. Thank you for your prayers.

Please note: I reserve the right to delete comments that are offensive or off-topic.

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7 thoughts on “What’s Going On in My Life & How You Can Pray

  1. Wow, thanks for sharing your journey with us. Please know that you have a brother at your back! Blessings and prayers for you and your family.

  2. We went thru this same issue w our son teddy. He was treated two years ago at Cleveland clinic and we were also staying at Ronald McDonald house. I want to encourage you that he is completely healed and it has been a growing experience for our entire family. Does your son have an email address? I know my son teddy would write him in a second. He is now 14 but remembers the pain and the tough but helpful route of therapy. We have learned some other treatment options we would be happy to share.

    I am a friend of Jessica lalley in atlanta and she forwarded your blog. Nothing in my life affected me more deeply than this experience. I so feel for where you are and will share w my husband who will also ache where you are in this journey…but w hope for you. Our prayers to your family.

  3. Greg – A friend passed along your latest post. Our son Teddy, 14, went through an intense 2 year battle with amplified pain syndrome (RND – Reflex Neurovascular Dystrophy). His pain level was almost unbearable until we got to the Cleveland Clinic. He worked hard everyday for a month to get back some measure of functioning. It was definitely helpful but did not deal with root cause. He was higher functioning but continued to have difficult episodes about every 5-6 weeks. Not able to walk, vertigo, etc. We had a major breakthrough a year ago and Teddy is enjoying better health than at any point in his life. Glad to share it with you if you think it may be helpful. Cell – 678-478-7209. email Dkeim31@gmail.com. God bless you as you forge ahead. Thanks, Doug Keim