Help Eric StandUp to Cerebral Palsy
Donation protected
Help Eric StandUp to Cerebral Palsy
Two and a half years ago our family started a journey that we never could have imagined. My brother Eric, who was already challenged by living with Cerebral Palsy, was struggling even more than normal. We thought it was just complications as he was getting older and growing with Cerebral Palsy. Around Christmas 2015, Eric wasn’t feeling well, had fallen a few times and it appeared he injured his arm. He was admitted to the hospital and spent a week there with a staph infection in his elbow that required a minor surgery to drain it. He was very weak, unable to stand, had difficulty with daily activities and unable to come home. We had to have him transferred to a rehab center that was more equipped to assist his needs. While this was a very difficult decision to make, we kept saying that “this was a blessing in disguise.” We did not know what that blessing was and were having a hard time understanding why Eric had to go through this. Eric was totally independent before, working part-time and working toward getting his own apartment. He even bought an adaptive van a few years ago and was able to drive on his own.
While Eric was at the rehab center, we found out what that “blessing” was…if you want to call it that. We learned that Eric had a tumor located from the top of C2 to the bottom of C6 in his spine, putting pressure on the spinal cord and creating severe spasms. It was determined that he would need surgery to try and remove the tumor. After an 8 hr. surgery, the doctor was able to remove about 40-50% of the tumor. The complication is that the tumor is growing directly from his spinal cord and appears to have been growing for an undetermined amount of time. The other complication was that they needed to be careful to not remove too much as it could have resulted in him being a quadriplegic. Thankfully, that was not the case. Even more of a blessing, the tumor is not malignant but it can continue to grow and cause problems. We have been very blessed with the doctors and staff at Froedtert Hospital. Eric spent about 6 months in the hospital through all this. He has had to learn a lot of new things, a “new normal,” and has faced many challenges along the way. As a result of the tumor there has been some permanent damage. He will likely not be able to walk again, and is unable to go about his daily routine that most of us take for granted. He suffers from extreme spasticity that often results in him going into a full plank. He has been working extremely hard on being able to learn how to deal with these changes and is becoming stronger through his hard work in therapy. Through all of this, we have all learned a lot. Whether it be medical terminology, procedures, symptoms and medical supplies all the way to the importance of family and friends. Most importantly…we all take life…and things in general…for granted!
So now what? Recently, Eric’s therapist felt he needed to switch from a manual wheelchair to a power wheelchair. The wheelchair recommended is one that will stand Eric up completely and allow him to move about in a standing position. Just a couple of the huge benefits of this for him are that standing puts pressure on his legs and will hopefully help reduce the severity of his spasms, it will allow for better blood flow and circulation which will reduce infections and strength building to help increase muscle strength in his back and legs to name a few. It will also allow for more independence. After numerous appointments, countless paperwork and crossed fingers, we received an answer from Medicare. They will not approve a stand-up chair, rather another power chair with less benefits. However, the stand up one can be “gifted” to him. Medicare does not allow Eric to have much of a savings account otherwise he would lose all his benefits.
The first hurdle is paying for the chair, the second is that my parents will need to make handicap accessible modifications to the house to accommodate its size difference. Eventually, we will also need to make modifications to his van to accommodate the change of the new chair. At this point, we are looking at raising enough to cover these three necessities. If you find it in your heart to donate, please know any contribution will leave us forever grateful and will go a long way toward improving Eric’s way of life. This has been the single, hardest thing that we have had to do…ask for help! Thank you for taking the time to read our story and for considering our cause.
Two and a half years ago our family started a journey that we never could have imagined. My brother Eric, who was already challenged by living with Cerebral Palsy, was struggling even more than normal. We thought it was just complications as he was getting older and growing with Cerebral Palsy. Around Christmas 2015, Eric wasn’t feeling well, had fallen a few times and it appeared he injured his arm. He was admitted to the hospital and spent a week there with a staph infection in his elbow that required a minor surgery to drain it. He was very weak, unable to stand, had difficulty with daily activities and unable to come home. We had to have him transferred to a rehab center that was more equipped to assist his needs. While this was a very difficult decision to make, we kept saying that “this was a blessing in disguise.” We did not know what that blessing was and were having a hard time understanding why Eric had to go through this. Eric was totally independent before, working part-time and working toward getting his own apartment. He even bought an adaptive van a few years ago and was able to drive on his own.
While Eric was at the rehab center, we found out what that “blessing” was…if you want to call it that. We learned that Eric had a tumor located from the top of C2 to the bottom of C6 in his spine, putting pressure on the spinal cord and creating severe spasms. It was determined that he would need surgery to try and remove the tumor. After an 8 hr. surgery, the doctor was able to remove about 40-50% of the tumor. The complication is that the tumor is growing directly from his spinal cord and appears to have been growing for an undetermined amount of time. The other complication was that they needed to be careful to not remove too much as it could have resulted in him being a quadriplegic. Thankfully, that was not the case. Even more of a blessing, the tumor is not malignant but it can continue to grow and cause problems. We have been very blessed with the doctors and staff at Froedtert Hospital. Eric spent about 6 months in the hospital through all this. He has had to learn a lot of new things, a “new normal,” and has faced many challenges along the way. As a result of the tumor there has been some permanent damage. He will likely not be able to walk again, and is unable to go about his daily routine that most of us take for granted. He suffers from extreme spasticity that often results in him going into a full plank. He has been working extremely hard on being able to learn how to deal with these changes and is becoming stronger through his hard work in therapy. Through all of this, we have all learned a lot. Whether it be medical terminology, procedures, symptoms and medical supplies all the way to the importance of family and friends. Most importantly…we all take life…and things in general…for granted!
So now what? Recently, Eric’s therapist felt he needed to switch from a manual wheelchair to a power wheelchair. The wheelchair recommended is one that will stand Eric up completely and allow him to move about in a standing position. Just a couple of the huge benefits of this for him are that standing puts pressure on his legs and will hopefully help reduce the severity of his spasms, it will allow for better blood flow and circulation which will reduce infections and strength building to help increase muscle strength in his back and legs to name a few. It will also allow for more independence. After numerous appointments, countless paperwork and crossed fingers, we received an answer from Medicare. They will not approve a stand-up chair, rather another power chair with less benefits. However, the stand up one can be “gifted” to him. Medicare does not allow Eric to have much of a savings account otherwise he would lose all his benefits.
The first hurdle is paying for the chair, the second is that my parents will need to make handicap accessible modifications to the house to accommodate its size difference. Eventually, we will also need to make modifications to his van to accommodate the change of the new chair. At this point, we are looking at raising enough to cover these three necessities. If you find it in your heart to donate, please know any contribution will leave us forever grateful and will go a long way toward improving Eric’s way of life. This has been the single, hardest thing that we have had to do…ask for help! Thank you for taking the time to read our story and for considering our cause.
Organizer and beneficiary
Rachelle Merlin
Organizer
Kenosha, WI
Jennifer Merlin
Beneficiary