Colten's Mitochondrial Fight
Donation protected
This GoFundMe account is in support of our friend, Colten. Colten Blackwell is a seven-year-old boy possessing a sweet spirit, is a friend to all, and greets everyone with a huge hug. His positive outlook on life will put a smile on your face, and he finds joy in the simplest moments in life.
Colten has a family who truly loves him. He is the big brother to his sweet little sister, Lucy, who is two. To say the word "big sister" describes Alexis perfectly. This fourteen-year-old cares and looks out for her little brother. You can tell by the bond these three siblings share that they'll always be there for each other. Colten thinks the world of his father, Jason, and his mother, Betsy, has a giving heart for all, especially those who cannot care for themselves.
Below is his story through our friend and his mom’s eyes. Thank you for taking the time to read it.
Colten has always struggled to meet his milestones growing up; when he was two, Colten still was not walking. His pediatrician at the time kept saying, "He's a boy; when he's ready to walk, he will walk." I requested referrals to other physicians. My husband and I took our son to his pediatrician, physical therapists, otolaryngologists, neurologists, and multiple second opinions. All his tests and assessments came back "normal." At this point, we thought maybe he will get better. With physical therapy, we still had a sense of hope that he would be able to walk and run with kids his age.
We will never forget the day, two weeks after our son's fifth birthday. We took the kids to a soccer tournament to see our friends play. As soon as we parked, we started to help Colten get out of the van and noticed, immediately, that to stand up he couldn't lock his legs. Over the next hour, Colten wasn't able to control his lower body. He needed to be physically supported to help him get from point A to point B. Panic started setting in, as you could imagine. When we were at that soccer game and saw Colten lose control of his body, unable to walk on his own at age five, we knew there was no denying something was wrong.
After multiple hospital stays, at different hospitals throughout the eastern coast, and many diagnosis over the last two years we finally received a correct diagnosis; another moment that my husband and I will not forget. This was a long road for our son, multiple tests- MRI's, CAT scans, spinal tap, endless blood work, nerve testing, and physical tests. All the while our son kept a great attitude. He never once complained. He would say to us, "My legs are broken." or "Mom, are we going to find a superhero that will fix my legs?"
Dr. Kinsman at MUSC Children’s Hospital has been the one doctor that never gave up on Colten or us. He's been trying to find out what the diagnosis is for two years. Because of his perseverance we now have a diagnosis, Mitochondrial Disease. Mitochondrial Disease attacks many parts of the body, with Colten we know that it's attacking his brain, muscles, and gastrointestinal. We know we have to keep our son healthy, don't let him get overheated or dehydrated. We cannot push him to where he's exhausted. If we don't follow these rules, he would have an "episode" which could ultimately be fatal or at minimal regress him back further.
There is no cure for Mitochondrial Disease, it is progressive, but there are resources that Colten could use and possibly provide him with a better quality of life not only now but for his future.
Boston Children's Hospital is ranked one of the best hospitals in research and current treatment for Mitochondrial Disease. It is recommended that Colten goes to Boston to determine a treatment plan for his future. It would educate his family on what is best for Colten. Please, if you can give anything to help support Colten’s trip and medical expenses at Boston Children's Hospital we would greatly appreciate your kindness.
Thank you!
Colten has a family who truly loves him. He is the big brother to his sweet little sister, Lucy, who is two. To say the word "big sister" describes Alexis perfectly. This fourteen-year-old cares and looks out for her little brother. You can tell by the bond these three siblings share that they'll always be there for each other. Colten thinks the world of his father, Jason, and his mother, Betsy, has a giving heart for all, especially those who cannot care for themselves.
Below is his story through our friend and his mom’s eyes. Thank you for taking the time to read it.
Colten has always struggled to meet his milestones growing up; when he was two, Colten still was not walking. His pediatrician at the time kept saying, "He's a boy; when he's ready to walk, he will walk." I requested referrals to other physicians. My husband and I took our son to his pediatrician, physical therapists, otolaryngologists, neurologists, and multiple second opinions. All his tests and assessments came back "normal." At this point, we thought maybe he will get better. With physical therapy, we still had a sense of hope that he would be able to walk and run with kids his age.
We will never forget the day, two weeks after our son's fifth birthday. We took the kids to a soccer tournament to see our friends play. As soon as we parked, we started to help Colten get out of the van and noticed, immediately, that to stand up he couldn't lock his legs. Over the next hour, Colten wasn't able to control his lower body. He needed to be physically supported to help him get from point A to point B. Panic started setting in, as you could imagine. When we were at that soccer game and saw Colten lose control of his body, unable to walk on his own at age five, we knew there was no denying something was wrong.
After multiple hospital stays, at different hospitals throughout the eastern coast, and many diagnosis over the last two years we finally received a correct diagnosis; another moment that my husband and I will not forget. This was a long road for our son, multiple tests- MRI's, CAT scans, spinal tap, endless blood work, nerve testing, and physical tests. All the while our son kept a great attitude. He never once complained. He would say to us, "My legs are broken." or "Mom, are we going to find a superhero that will fix my legs?"
Dr. Kinsman at MUSC Children’s Hospital has been the one doctor that never gave up on Colten or us. He's been trying to find out what the diagnosis is for two years. Because of his perseverance we now have a diagnosis, Mitochondrial Disease. Mitochondrial Disease attacks many parts of the body, with Colten we know that it's attacking his brain, muscles, and gastrointestinal. We know we have to keep our son healthy, don't let him get overheated or dehydrated. We cannot push him to where he's exhausted. If we don't follow these rules, he would have an "episode" which could ultimately be fatal or at minimal regress him back further.
There is no cure for Mitochondrial Disease, it is progressive, but there are resources that Colten could use and possibly provide him with a better quality of life not only now but for his future.
Boston Children's Hospital is ranked one of the best hospitals in research and current treatment for Mitochondrial Disease. It is recommended that Colten goes to Boston to determine a treatment plan for his future. It would educate his family on what is best for Colten. Please, if you can give anything to help support Colten’s trip and medical expenses at Boston Children's Hospital we would greatly appreciate your kindness.
Thank you!
Organizer and beneficiary
Kim Serface
Organizer
Savannah, GA
Betsy Blackwell
Beneficiary