Brandt's Crippling Diseases
Donation protected
Brandt Kuhr was happy and vibrant. He was active and enjoyed anything outdoors as well as all kinds of music and art. He was always making friends and pushing forward no matter what happened, but then he had the first stroke; our journey into the world of rare diseases began. That first night after his stroke we debated on going to the hospital. Money was tight and we didn't really know what had happened. When we finally got there the results were not what we expected. 29+ lesions all throughout his brain with 5 in the brain stem. We were told that he had Cerebral Cavernous Malformations or CCM and that the symptoms were the result of a lesion breaking and bleeding onto the brain causing a stroke. This would happen 9 more times before we finally found a doctor who could help us at Mayo Clinic in Minnesota.
He went to Rochester and Brandt got a Right Craniotomy. By the grace of God he not only survived but two days after the surgery he wanted to leave and go shopping at a mall for souvenirs! For the following four years he healed and despite constant setbacks started college just three months after the operation, he got straight A's his first semester. Brandt worked hard and worked harder in the gym strengthening his ailing body. As the years past he became stronger and healthier, until this past summer of 2018, when his health suddenly failed and he was bedridden for two months. As always, the moment he recovered he was back in the gym every morning for about four weeks until it hit........
He didn't know at the time but the pain in is shoulder and back that started in August was not due to injury but something worse than we could have known. He was recently diagnosed with Chronic Inflammatory Demyelinating Polynuropathy or CIDP. The disease is an imuno disorder that eats the nerves of the body and kills the muscle. His is a particularly rare case that attacks the sensory nerves and is in terrible pain, losing weight and badly weakening. After a recent unsuccessful spinal tap he was debilitated for days and is always in terrible pain. For all these months he has attended college and even managed to keep his grades high, but is no longer physically able to do so. The disease cannot be cured much like his CCM, but it can be slowed with repeated infusion treatments that replace the bad antibodies that are dissolving him. He needs help paying for these hospital visits, and constant painful tests but most of all paying for these treatments. Please pray for us and ask God if He would have you help us.
Thank you. He is very grateful.
Brandt
He went to Rochester and Brandt got a Right Craniotomy. By the grace of God he not only survived but two days after the surgery he wanted to leave and go shopping at a mall for souvenirs! For the following four years he healed and despite constant setbacks started college just three months after the operation, he got straight A's his first semester. Brandt worked hard and worked harder in the gym strengthening his ailing body. As the years past he became stronger and healthier, until this past summer of 2018, when his health suddenly failed and he was bedridden for two months. As always, the moment he recovered he was back in the gym every morning for about four weeks until it hit........
He didn't know at the time but the pain in is shoulder and back that started in August was not due to injury but something worse than we could have known. He was recently diagnosed with Chronic Inflammatory Demyelinating Polynuropathy or CIDP. The disease is an imuno disorder that eats the nerves of the body and kills the muscle. His is a particularly rare case that attacks the sensory nerves and is in terrible pain, losing weight and badly weakening. After a recent unsuccessful spinal tap he was debilitated for days and is always in terrible pain. For all these months he has attended college and even managed to keep his grades high, but is no longer physically able to do so. The disease cannot be cured much like his CCM, but it can be slowed with repeated infusion treatments that replace the bad antibodies that are dissolving him. He needs help paying for these hospital visits, and constant painful tests but most of all paying for these treatments. Please pray for us and ask God if He would have you help us.
Thank you. He is very grateful.
Brandt
Organizer and beneficiary
Candace McMeans
Organizer
Englewood, CO
Pamela Kuhr
Beneficiary
