A Ride for Reed
Donation protected
At 16 months old Reed was diagnosed with Spinal Muscular Atrophy Type II.
SMA is a disease that affects the motor nerve cells in the spinal cord taking away the ability to walk, eat and breathe. In Reed’s case, he is primarily affected below the rib cage, taking away his ability to stand or walk.
Reed is now 3 years old and growing each day, making it harder and harder for his parents to transfer him and his wheel chair in and out of their vehicle. The Reuter Family needs to purchase an accessible vehicle for Reed.
This fundraiser is to help offset the cost of that vehicle.
Learn more about and follow Reed and his journey at facebook.com/ReedCAN
**Original Campaign and Post June 2015**
Our son Reed is 16 months old. Reed was admitted to Children's Hospital in Minneapolis on June 10th. He is unable to bear weight on his legs due to low muscle tone and weakness in his trunk and lower extremities, has had many bowel issues over the past few months and has been unable to gain and maintain more than 15oz in 7 months. He appears to be growing weaker each day. We have struggled and fought for answers for our baby for nearly a year now. It is time to find out why and what is causing such regression in development.
Prior to coming to Children's Reed had been to see his pediatrician 2-3 times per month, a pediatric ENT, pediatric cardiologist, pediatric physical medicine doc, pediatric GI specialist, pediatric physical therapist and had many visits to the ER, without any explanation to his condition. Reed's team of doctors and nurses here at Children's have been more than wonderful to us. They said "when we find the answer we stop looking, when we don't we dig deeper until we do". Our team of doctors are working together to decide what the next best step could be."
Yesterday Reed had a lumbar puncture test. The procedure is similar to an epidural, except they extract the spinal fluid and are now testing for abnormalities. In speaking with the doctor afterwards, I asked him "Is it common for children to not use their lower extremities?" He said "No. When we did not find an issue with Reed's MRI or a tumor, our team met and I said, this is going to be a rare case. Reed is really making us think." He also said that he's confident that when we do discover what Reed's condition is, "he's going to be ok", he is a brilliant little boy with a healthy brain and structurally normal spine. We just need to keep testing and working as a team to find the answer.
This entire process has been an experience that words can't even begin to explain. The hardest part for me, is also the simplest: I have known that there is something rare and different with my child since day 1, and it became extremely apparent to me when he was only a few months old. Im his mother and there is something to be said about a mother's intuition, it is not a cliché. When I expressed my concerns to other medical professionals and was not taken seriously, I was so angry. I contained my feelings, as I thought that if they thought something was alarming, they would have shared my feelings and steered me in the right direction. I have spent everyday praying, wondering, thinking I must be crazy, I must not be encouraging my baby enough, he will stand, he will walk, but deep down inside have always always known, it is not that simple for him. Never ever, question your gut. I can not go back in time, of this I am aware. I just thank God for never letting me give up. I have faith he will give us the answers we are looking for. The team of doctors here at Children's are amazing, honest, caring, intelligent and kind as can be. It is refreshing and brings me peace. It is not ideal to "live in a hospital", but this is a wonderful place to be if you must. Again, THANK YOU FOR ALL OF THE PRAYERS!!!!!!
We never thought in a million years we would be here, but we are. We have savings for a rainy day but this is a hurricane. I feel blessed to have insurance, but even at that we can not even begin to think about the bills we will be receiving for the numerous tests and long hospital stay and the future procedures if need be. Cory's employer has been understanding and supporting of him being here with his family but he has loss wages while watching our expenses rise. Any contribution is more than appreciated.
Thank you so very much for your support to our family's journey.
Brittany, Cory & Reed
SMA is a disease that affects the motor nerve cells in the spinal cord taking away the ability to walk, eat and breathe. In Reed’s case, he is primarily affected below the rib cage, taking away his ability to stand or walk.
Reed is now 3 years old and growing each day, making it harder and harder for his parents to transfer him and his wheel chair in and out of their vehicle. The Reuter Family needs to purchase an accessible vehicle for Reed.
This fundraiser is to help offset the cost of that vehicle.
Learn more about and follow Reed and his journey at facebook.com/ReedCAN
**Original Campaign and Post June 2015**
Our son Reed is 16 months old. Reed was admitted to Children's Hospital in Minneapolis on June 10th. He is unable to bear weight on his legs due to low muscle tone and weakness in his trunk and lower extremities, has had many bowel issues over the past few months and has been unable to gain and maintain more than 15oz in 7 months. He appears to be growing weaker each day. We have struggled and fought for answers for our baby for nearly a year now. It is time to find out why and what is causing such regression in development.
Prior to coming to Children's Reed had been to see his pediatrician 2-3 times per month, a pediatric ENT, pediatric cardiologist, pediatric physical medicine doc, pediatric GI specialist, pediatric physical therapist and had many visits to the ER, without any explanation to his condition. Reed's team of doctors and nurses here at Children's have been more than wonderful to us. They said "when we find the answer we stop looking, when we don't we dig deeper until we do". Our team of doctors are working together to decide what the next best step could be."
Yesterday Reed had a lumbar puncture test. The procedure is similar to an epidural, except they extract the spinal fluid and are now testing for abnormalities. In speaking with the doctor afterwards, I asked him "Is it common for children to not use their lower extremities?" He said "No. When we did not find an issue with Reed's MRI or a tumor, our team met and I said, this is going to be a rare case. Reed is really making us think." He also said that he's confident that when we do discover what Reed's condition is, "he's going to be ok", he is a brilliant little boy with a healthy brain and structurally normal spine. We just need to keep testing and working as a team to find the answer.
This entire process has been an experience that words can't even begin to explain. The hardest part for me, is also the simplest: I have known that there is something rare and different with my child since day 1, and it became extremely apparent to me when he was only a few months old. Im his mother and there is something to be said about a mother's intuition, it is not a cliché. When I expressed my concerns to other medical professionals and was not taken seriously, I was so angry. I contained my feelings, as I thought that if they thought something was alarming, they would have shared my feelings and steered me in the right direction. I have spent everyday praying, wondering, thinking I must be crazy, I must not be encouraging my baby enough, he will stand, he will walk, but deep down inside have always always known, it is not that simple for him. Never ever, question your gut. I can not go back in time, of this I am aware. I just thank God for never letting me give up. I have faith he will give us the answers we are looking for. The team of doctors here at Children's are amazing, honest, caring, intelligent and kind as can be. It is refreshing and brings me peace. It is not ideal to "live in a hospital", but this is a wonderful place to be if you must. Again, THANK YOU FOR ALL OF THE PRAYERS!!!!!!
We never thought in a million years we would be here, but we are. We have savings for a rainy day but this is a hurricane. I feel blessed to have insurance, but even at that we can not even begin to think about the bills we will be receiving for the numerous tests and long hospital stay and the future procedures if need be. Cory's employer has been understanding and supporting of him being here with his family but he has loss wages while watching our expenses rise. Any contribution is more than appreciated.
Thank you so very much for your support to our family's journey.
Brittany, Cory & Reed
Organizer
Brittany Nichole Rognerud
Organizer
Nashwauk, MN
