Help Wayne Stay Healthy
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Thank you for taking the time to read Wayne's story. It’s been a long road to get Wayne where he is today and truly has taken a village. Your donation no matter how small will help raise the funds needed to purchase the FES RT300 cycle, join me in being a part of something bigger and give Wayne the quality of life he deserves, one that will allow him to be healthier, more independent, and live longer. Below is Wayne's story.
Wayne is a 24 year old quadriplegic as a result of a motor vehicle accident in January 2016. Wayne currently resides in Smyrna Delaware with his family. Prior to Wayne’s accident he was an active individual. While in high school Wayne volunteered his time working with Habitat for Humanity building homes for the less fortunate, and played ice hockey. Wayne continued his love for hockey playing for the Delaware Ducks travel team. Wayne also enjoyed attending music festivals, concerts, mixing/creating music, DJ’ing with his friends at several locations in Philadelphia, and spending time with his family. Wayne was a regular at my house, hanging out with my son Wesley mixing/creating their music and planning what was next. Wayne always had a smile on his face and time to be silly with my granddaughters who loved when Wayne stopped over. Wayne and Wesley still make music together at Wayne’s house and have “bro” time.
In the days following the accident Wayne’s family didn’t know if he would survive or what it would be like if he did. Wayne’s mother Kelly used FMLA from January 1 – March 21st. Once her FMLA was exhausted, Kelly went back to work 2 days a week still spending every day with Wayne. Kelly is blessed to have such an amazing employer. Wayne spent 46 days in ICU at Christiana Hospital. While in ICU he had 3 surgeries: Spinal Cord Fusion & Dysectomy, Left Humerus, and Tracheotomy. Once stable he was transferred to Magee Rehabilitation in Philadelphia PA where he received extensive therapy.
Above is "Wayne's Crew" friends who went daily to the hospital. Because only family was allowed in the room, they waited in the lobby for Wayne's family to come out with updates.
His family had two choices, arrange for him to be placed in a nursing facility or bring him home. It wasn’t a hard choice, Wayne would come home. There was much work to be done before that could happen by both Wayne and his family. Wayne continued to work hard in rehab while his family attempted to obtain funding to turn their garage into a medical equipped bedroom and bath to accommodate Wayne’s needs and to purchase a van to transport Wayne to the doctors. Through friends, family, an auction, and a GoFundMe page they were able to make it happen but not without draining their emergency savings and some financial struggles. Now all they needed was for Wayne to do his part which would not be an easy task. Since his discharge from ICU, Wayne has had toe surgery, baclofen pump surgery, 4 cystoscopy surgeries, hand and wrist surgery, cystoscopy and catheter surgeries, and many UTI infections some of which would require his mom to take him to the doctor. Today his doctors’ visits have lessened, on average Wayne has 6 trips to Pennsylvania a month.
Prior to Wayne’s June 2016 discharge from Magee his family had to have training on how to properly care for Wayne from bathing and feeding to cleaning his wounds and giving meds. It was imperative that they were able to learn proper procedures especially since his insurance would not provide full-time nursing care. Today after a long battle, his insurance does provide a nurse for 8 hours a day on weekdays except Tuesday is only 3 hours as Kelly takes off work to take Wayne Bryn Mawr Rehabilitation in Malvern PA, nurse 6 hours a day on weekends, an aide 2 hours in am and 2 hours in the evening to get him in bed.
Wayne’s spinal cord injury caused profound immobility and inactivity in the upper and lower extremities. Magee found it medically necessary for Wayne to have an alternative form of active therapy since he lost the ability to do this volitionally. He needed to maintain his physical condition to minimize future medical complications which could have serious health consequences and be costly to resolve, to avoid metabolic changes like decrease in muscle mass, increase body fat, decreased lower bone density, and limited joint ROM all of which can lead to further complications. Wayne accepted every opportunity to strengthen and improve his motor functions. He started using the FES RT300 at Bryn Mawr Rehab which provides intense electrical stimulation below the level of Wayne’s neuralgic injury. The electrical stimulation provides a strong, coordinated muscle contraction in Wayne’s arms and legs creating a therapeutic dosage of intensive movement and patterned neural activity which he would not otherwise be able to do. This also allows for muscle relaxation, prevention or retraction of disuse atrophy, increases local blood circulation, maintains and increases his range of motion, all of which Wayne struggles with daily not to mention the other benefits, which overall also decrease medical costs for issues arising from not having the activity. Since his start of using the FES RT300 Wayne can now feed himself with little to no assistance, brush his teeth, shave, use a stylus on his phone or tablet when he previously used a mouth stick, lift his arms to push items on the counter, push the button on automatic doors, and use his wrist and arm for wheelchair movement.
Wayne isn’t stopping there, he has goals! Wayne someday hopes to be able to pick up his meds cup, currently his home nurse has to do it for him, he wants to roll over and assist with transfer which will help with skin breakdown, grooming such as washing his face and showering, he is enrolled at Del Tech for the fall semester under Information Technology and working with his counselors on assistive devices and audio books since he cannot turn the pages (yet) but most importantly Wayne is focused on staying strong, out of the hospital, gaining strength, reducing his weight, and reducing his home nurse hours.
In 2017 Magee recommended to increase Wayne’s use of the FES RT300 through home use for all the reasons stated above but his insurance will only cover 2 times a week at Bryn Mawr. Wayne and his family submitted his request along with a letter and documents proving the benefits of the FES RT300 from Erin O’Donnell (PT, DPT, NCS) from Magee to Highmark Health Options to purchase the FES RT300 ($27,550) which is prescribed as the only available active physical movement at-home rehabilitation therapy for someone with Wayne’s condition. To our knowledge, there is not a therapy facility in the state of Delaware with an FES RT300.
In August 2017 Although Wayne provided medical documents, research results, and evidence of the benefits of FES RT300 to Highmark Health Options, his request was denied stating “the item is considered exercise equipment and not medically necessary.” The family appealed. Their appeal was denied stating “the standard of care for preventing contractures and avoiding skin breakdown is passive range of motion and intensive stretching. There is no evidence of functional gains or purposeful movements resulting for this equipment compared to standard of care of physical therapy.” Medicare and Medicaid have also denied the request. Medicare will consider cover of an FES device “only” if it will enhance the patients’ ability to walk again and the patient meets all 9 of their listed characteristics.
Please share Wayne’s story and follow him at #HelpWayneStayHealthy on Twitter and Instagram.
Thank you for your support in the purchase of the FES RT300 and be sure to check back for updates on Wayne’s progress.
Much Love,
Valerie
Wayne is a 24 year old quadriplegic as a result of a motor vehicle accident in January 2016. Wayne currently resides in Smyrna Delaware with his family. Prior to Wayne’s accident he was an active individual. While in high school Wayne volunteered his time working with Habitat for Humanity building homes for the less fortunate, and played ice hockey. Wayne continued his love for hockey playing for the Delaware Ducks travel team. Wayne also enjoyed attending music festivals, concerts, mixing/creating music, DJ’ing with his friends at several locations in Philadelphia, and spending time with his family. Wayne was a regular at my house, hanging out with my son Wesley mixing/creating their music and planning what was next. Wayne always had a smile on his face and time to be silly with my granddaughters who loved when Wayne stopped over. Wayne and Wesley still make music together at Wayne’s house and have “bro” time. In the days following the accident Wayne’s family didn’t know if he would survive or what it would be like if he did. Wayne’s mother Kelly used FMLA from January 1 – March 21st. Once her FMLA was exhausted, Kelly went back to work 2 days a week still spending every day with Wayne. Kelly is blessed to have such an amazing employer. Wayne spent 46 days in ICU at Christiana Hospital. While in ICU he had 3 surgeries: Spinal Cord Fusion & Dysectomy, Left Humerus, and Tracheotomy. Once stable he was transferred to Magee Rehabilitation in Philadelphia PA where he received extensive therapy. Above is "Wayne's Crew" friends who went daily to the hospital. Because only family was allowed in the room, they waited in the lobby for Wayne's family to come out with updates.His family had two choices, arrange for him to be placed in a nursing facility or bring him home. It wasn’t a hard choice, Wayne would come home. There was much work to be done before that could happen by both Wayne and his family. Wayne continued to work hard in rehab while his family attempted to obtain funding to turn their garage into a medical equipped bedroom and bath to accommodate Wayne’s needs and to purchase a van to transport Wayne to the doctors. Through friends, family, an auction, and a GoFundMe page they were able to make it happen but not without draining their emergency savings and some financial struggles. Now all they needed was for Wayne to do his part which would not be an easy task. Since his discharge from ICU, Wayne has had toe surgery, baclofen pump surgery, 4 cystoscopy surgeries, hand and wrist surgery, cystoscopy and catheter surgeries, and many UTI infections some of which would require his mom to take him to the doctor. Today his doctors’ visits have lessened, on average Wayne has 6 trips to Pennsylvania a month. Prior to Wayne’s June 2016 discharge from Magee his family had to have training on how to properly care for Wayne from bathing and feeding to cleaning his wounds and giving meds. It was imperative that they were able to learn proper procedures especially since his insurance would not provide full-time nursing care. Today after a long battle, his insurance does provide a nurse for 8 hours a day on weekdays except Tuesday is only 3 hours as Kelly takes off work to take Wayne Bryn Mawr Rehabilitation in Malvern PA, nurse 6 hours a day on weekends, an aide 2 hours in am and 2 hours in the evening to get him in bed. Wayne’s spinal cord injury caused profound immobility and inactivity in the upper and lower extremities. Magee found it medically necessary for Wayne to have an alternative form of active therapy since he lost the ability to do this volitionally. He needed to maintain his physical condition to minimize future medical complications which could have serious health consequences and be costly to resolve, to avoid metabolic changes like decrease in muscle mass, increase body fat, decreased lower bone density, and limited joint ROM all of which can lead to further complications. Wayne accepted every opportunity to strengthen and improve his motor functions. He started using the FES RT300 at Bryn Mawr Rehab which provides intense electrical stimulation below the level of Wayne’s neuralgic injury. The electrical stimulation provides a strong, coordinated muscle contraction in Wayne’s arms and legs creating a therapeutic dosage of intensive movement and patterned neural activity which he would not otherwise be able to do. This also allows for muscle relaxation, prevention or retraction of disuse atrophy, increases local blood circulation, maintains and increases his range of motion, all of which Wayne struggles with daily not to mention the other benefits, which overall also decrease medical costs for issues arising from not having the activity. Since his start of using the FES RT300 Wayne can now feed himself with little to no assistance, brush his teeth, shave, use a stylus on his phone or tablet when he previously used a mouth stick, lift his arms to push items on the counter, push the button on automatic doors, and use his wrist and arm for wheelchair movement.
Wayne isn’t stopping there, he has goals! Wayne someday hopes to be able to pick up his meds cup, currently his home nurse has to do it for him, he wants to roll over and assist with transfer which will help with skin breakdown, grooming such as washing his face and showering, he is enrolled at Del Tech for the fall semester under Information Technology and working with his counselors on assistive devices and audio books since he cannot turn the pages (yet) but most importantly Wayne is focused on staying strong, out of the hospital, gaining strength, reducing his weight, and reducing his home nurse hours. In 2017 Magee recommended to increase Wayne’s use of the FES RT300 through home use for all the reasons stated above but his insurance will only cover 2 times a week at Bryn Mawr. Wayne and his family submitted his request along with a letter and documents proving the benefits of the FES RT300 from Erin O’Donnell (PT, DPT, NCS) from Magee to Highmark Health Options to purchase the FES RT300 ($27,550) which is prescribed as the only available active physical movement at-home rehabilitation therapy for someone with Wayne’s condition. To our knowledge, there is not a therapy facility in the state of Delaware with an FES RT300.
In August 2017 Although Wayne provided medical documents, research results, and evidence of the benefits of FES RT300 to Highmark Health Options, his request was denied stating “the item is considered exercise equipment and not medically necessary.” The family appealed. Their appeal was denied stating “the standard of care for preventing contractures and avoiding skin breakdown is passive range of motion and intensive stretching. There is no evidence of functional gains or purposeful movements resulting for this equipment compared to standard of care of physical therapy.” Medicare and Medicaid have also denied the request. Medicare will consider cover of an FES device “only” if it will enhance the patients’ ability to walk again and the patient meets all 9 of their listed characteristics. Please share Wayne’s story and follow him at #HelpWayneStayHealthy on Twitter and Instagram.
Thank you for your support in the purchase of the FES RT300 and be sure to check back for updates on Wayne’s progress.
Much Love,
Valerie
Organizer and beneficiary
Valerie Brown
Organizer
Smyrna, DE
Kelly Tharp
Beneficiary