The Boston Marathon has a finish line but it never means it's over. My youngest daughter Sadie Rose has been running her marathon for 19 years and everytime she gains a mile another mile is added. She keeps moving forward although sometimes it seems she is going in reverse. This is a very hard letter to write as 2021 has been the biggest struggle for Sadie. Her Elhers Danlos Syndrome(EDS) is becoming more progressive. For her type of EDS her ligaments become stretched and her muscles become fatigued to hold the joints in place. This becomes painful on her nerves which can trigger her Nerve Entrapments. This is all very painful and is starting to limit Sadie in her physical activity. Sadie will still walk 2 miles a day a few times a week and will actually run a mile on the treadmill.
Sadie has become quite the baker and although a pescatarian she can season a steak like no other, it's so good she even takes a bite. During the pandemic she has us all watching every cooking show, especially every Gordon Ramsay show. She has us all hooked and family time has been great during all of this.
Thank you for your donation as 100% funds will go to Sadie's Team of Doctors and Scientist. No administration fees!!! 100% for research under the Pediatric Interventional Pain Service Fund. Below is current research projects that Sadie benefits from. Your donation makes a difference especially to my Sadie Rose.
Thank you from the bottom ofour hearts, Michael, Shannon, Hanna and Sadie Rose
Current research projects include:
*A prospective controlled treatment trial for post traumatic headaches (PTH). This is a concussion headache study funded by the Harvard Catalyst and NFL comparing the efficacy of occipital blocks and cervical facet joint injections
*Retrospective review of outcomes and prospective follow-up of pediatric patients with axial back pain secondary to lumbar facet arthropathy following a lumbar medial branch block/facet block
*Efficacy of ultrasound-guided interventions in abdominal cutaneous nerve entrapment syndrome (ACNES) in children: a retrospective review and prospective follow-up
*Retrospective review of outcomes and prospective follow-up of pediatric patients with lumbar disc herniation radiculopathy and/or back pain
*Surgical management of abdominal cutaneous nerve entrapment (ACNES) in children: a retrospective review
*Efficacy of pediatric interventional pain procedures in chronic pain: a quality improvement initiative
*A prospective, multi-center, randomized, assessor blind, controlled study comparing lateral branch cooled radio frequency denervation to conservative therapy as treatment for sacroiliac joint pain in a military and civilian population (at Brigham and Women's Hospital)
*Use of cooled radio frequency for the treatment of hip pain associated with osteoarthritis of the hip compared to intra-articular steroid injections (at Brigham and Women's Hospital)
Thank you for the bottom of my heart.
P.S. If you ever wanted to run the Boston Marathon with me please reach out. This will be my 19th Boston Marathon and I'm still waiting for someone to take me up on the offer. Running is fun(it actually is), marathoning is challenging on the heart and soul but fundraising for Boston Children's Hospital is so rewarding it will change your outlook on life.