Jessica Acton is a sophomore at Hardin Northern High School and is in a battle against rare disorders that most of us cannot even imagine. The following is the most recent update that Jessica’s family has been so kind to share:
Jessica continues to struggle daily doing everyday tasks. She suffers from Hypokalemic Periodic Paralysis (a very rare neuromuscular disease), Ehlers Danlos Syndrome (a genetic connective tissue disorder), Tachycardia and she also has Osteopenia. The bones in her spine that have a lower density and are of concern at this point with fear of future fracture with little to no injury or trauma are L1-L4 but her total body has low bone density. Her recent Hypokalemic Periodic Paralysis attack on Nov. 29th not only dropped her potassium to a life threatening level of 2.3 but also left her muscles extremely weak and caused more damage. The Neuromuscular disorders clinic has informed us that the more periodic paralysis attacks that occur the more permanent muscle damage that will result. Nine days have past and her legs are still weak. She has only been sitting unassisted for the past few days. Yesterday she was given a prescription for a wheelchair and as you might imagine this was a huge hit for someone her age. So we are in search of a pink one at her request! It will mainly be used during and immediately after attacks at this point, but eventually will become more needed as her disease progresses. She longs to be an active teenager participating in after school activities and karate but these things are just not feasible at this time. The Ehlers Danlos is causing severe pain and many dislocations. Her hips are dislocating and subluxing a few times daily. Her home heart monitor recently captured her heart rate at over 170 beats per minute. Jessica now has physical therapy 3 days per week.
As a family we are only asking for prayers and good wishes. We do not need anything else at this time. We have no outstanding medical bills and Jess is getting everything she needs. We are blessed to live in such a small community full of so many wonderful people and we are very excited that Jess gets to stay a Polar Bear! Her classmates keep in touch and have already been so supportive. We can’t thank the HN Staff enough for all of their understanding and help during this difficult time. Anyone wishing to send cards or letters to Jessica can do so at our address of P.O. Box 42 Dola, OH 45835. Healthy visitors are always welcome.