Running for the Rose
I will be running the Boston Marathon for Sadie Rose, my 14 year old daughter. Sadie has been a patient at Children's Hospital since she was a toddler. Sadie went undiagnosed and suffered from chronic pain for many years. Sadie has received many types of medical treatment including traditional pain medicine, acupuncture, bio feedback therapy, injections, and surgery. She has spent weekly stays at Children’s Hospital screaming from uncontrollable nerve pain and morphine would only take the edge off.
Sadie suffers from Eosinophilic Esophagitis, Eosinophilic Colitis, and Acute Cutaneous Nerve Entrapments. Only after a procedure where Sadie was placed under anesthesia that her body was still responding to pain that a doctor from Children’s Hospital directed us to the Pain Clinic at Children’s Hospital. At this time we were devastated that not only do we not know why she is suffering from pain but the procedure has caused a hematoma in her colon and tears in her esophagus. This causes yet another stay in the hospital.
Sadie missed almost all of 6th grade and missed quite a bit of the 8th grade due to her condition. We have had months were we couldn’t touch her. No hugs, no caressing her, she could not laugh, cough or sneeze as the nerve pain was so great. Sadie explained it as being “paralyzed with pain”. These simple normal everyday things would turn into tears as the movement disrupted the nerves and put her back in to severe pain. Finding the Pain Clinic was a true blessing. They started with nerve blocks, then surgery to cut the nerves in her abdomen. At the time Sadie was only the 7th person to receive this type of surgery and yes it worked! However cutting all the nerves is not an option. As the nerve pain moved to her head leaving her with pain, deafness in her left ear and numbness to the left side of her face. The nerve pain didn’t stop there it went to her legs and returned to her abdomen. Sadie was put on the top of the list for Lidocaine Infusion treatments. This would be new treatment offered at Children’s Hospital and the doctors had been pushing for this treatment at the hospital for the last five years. Sadie had been on the waiting list for two years and the wait list was very long due to many children waiting in pain for this treatment.
Sadie’s Doctors at the Pain Clinic were relentless to get this procedure approved. Sadie had her 1st infusion on August 17th and her next one is October 5th. The results were almost immediate and for the first time in many years her pain level dropped below a 5. We are so thankful!
The Pain Clinic is so underfunded that have been allotted time for only one patient per week to receive this treatment. The goal is for a patient to receive several treatments in a row to help eliminate the pain before it builds back up. I set out to help them in any way possible. My goal is to raise one million dollars in my lifetime. My goal this year is $26,200.
100% of the funds I raise will go directly to the Boston Children’s Hospital Pain Clinic
Please share our message with friends and family.
Thank you from the bottom of my heart,
Michael, Shannon, Hanna and Sadie Rose