Prayers For Colton
Donation protected
Coltons Facebook Page Colton is a Chesapeake,VA baby currently in Minneapolis undergoing treatment for one of the rare bone diseases; Malignant Infintile Oseteopetrosis which he was diagnosed at 8 weeks of age.. He received his first transplant in June which ultimately failed, and some of the medication he was on put him in heart failure. Colton is currently in the hospital waiting on his critical 2nd bone marrow transplant, as soon as his heart shows its strong enough to endure a 2nd transplant. Without one his condition is fatal.
MALIGNANT INFANTILE OSTEOPETROSIS: MIOP: Colton was diagnosed at just 8 weeks old with a rare bone disease called infantile osteopetrosis also known as "Stone Bone", "Marble Bone", or "Statue Bone". This is one of the rarest, most fatal forms of bone disease. Infantile form is often referred to as lethal. Most times when an infant is diagnosed with osteopetrosis it is often too late and those infants die within days or weeks of a diagnosis. Time is of the essence in these cases to prevent blindness(which Colton unfortunately developed at just shy of 3m), deafness, facial paralysis, strokes, seizures and ultimately death. It is by a mom well accustomed to parenting and knowing something was not “right” with her child and a pediatrician running additional testing that they found this diagnosis. Mom was prepared for the first transplant, but now that they are awaiting on a 2nd transplant and once being released home, having to be out of work for an additional year to care for Colton a new fundraiser has been set up, to help with the continuing expenses.
Below is Colton's full story, feel free to follow his journey on Facebook as well.
http://wtkr.com/2015/05/15/chesapeake-baby-battles-rare-condition/ Colton was born as, what seemed to be, a perfect, healthy baby boy. At 3 days old he had congestion, which can be normal, and it was left at that. His parents noticed that his breathing was getting worse to the point he had to breathe through his mouth. After many appointments with his pediatrician, his parents took him to the ER where he was diagnosed with bronchiolitis at just 3 weeks old. After a two day stay in the hospital, he was released home. His parents still very worried because his breathing still wasn't right. After approximately 2 different doctor's appointments and 5 different ER trips, he was re-admitted to the hospital at 6 weeks old. He was then diagnosed with neonatal rhinitis, a rare condition that some infants are diagnosed with. He was promptly started on a steroid regimen that immensely corrected his breathing. After 6 days he was released home on a Monday. Everything seemed fine and they finally had a happy and healthy baby... until...Thursday. That is when they noticed blood….mixed in his urine so mom promptly took him to his pediatrician where they tested his urine and ran a CBC on him. When the doctor called with the results the doctor told his parents not to Google or panic yet until they figure out if the results were due to lab error but that His platelet levels were low, and white blood cell count was high as well as he had an extremely low calcium level. They returned to the doctor the next morning to re run his blood work. They got the results back right away and they looked promising his platelets came up some but were still low, his white blood cell count had started to go down but his calcium level was still low. Since Colton had his 2 month appointment scheduled for Monday the doctor sent them home and told them to keep a sharp eye on him and that if he shows any signs of getting worse take him to the ER. At this point, he was sleeping all of the time and his milk intake was decreasing. So Saturday Mom kept a sharp eye on him. Saturday he slept all day and was force fed 3oz not taking more then 1/2oz to a 1oz at a time. At this point, they knew it was time to head back to the ER. Once in the ER and having told his extensive background to the resident, she went and grabbed her attending who promptly came in. You could see on her face, she was baffled. Nothing was adding up Colton’s blood levels were everywhere and she didn't even know where to begin. So she said “she would figure this out”. The hospital ran a ton of blood work ordered an ultrasound. As they were prepping Colton for his ultrasound last minute, the doctor changed her mind and did an x-ray of his stomach because his levels were still all over the board and the x-ray seemed OK, they eventually did an ultrasound. They decided to admit him to the hospital assigned GI, endocrinology and hematology to his case to get to the bottom of this. The next morning, the hospitalist came in to explain the doctors that will be coming in and that he will listen to them all and WE WILL figure this out. GI came in did his exam as well as endocrine. All of a sudden the resident that had been on Colton’s care since he was 6 weeks old came in to let his parents know when re-looking at the x-ray they noticed that both femurs were fractured. At this point, with them seeing the fractures, low calcium, and liver level they were thinking a bone disease and promptly ordered a full body scan. A few hours later the parents were given heart stopping news that their baby's body was covered in broken bones and were given the diagnosis of infantile osteopetrosis. Again, this is one of the rarest, most fatal forms of bone disease. Even though their baby is at CHKD none of the doctors knew ANYTHING. There has NEVER been a case here. So the doctors spent all night reaching out to leading hospitals around the country when they found an osteopetrosis clinic in the University of Minnesota. Colton now has a fighting chance since his diagnosis was so early due to a fluke x-ray. So now the family is in a scramble turning their lives upside-down to save baby Colton. Because mom still have two little ones at home, and Mom has left her position at work, to make the temporary move to Minnesota. The older siblings will remain in Va with their Aunt to keep as normal of a life for them as possible. The family will be making flights back and forth to and from Minnesota spending time with all her babies to let them know they are loved and not forgotten. Now for the ultimate reason behind this fund, rent and bills are going to still need paid both back home in Virginia and in Minnesota and with needing to be right by Colton’s side, it is becoming extremely tough to afford it all. We're asking for donations to ensure stable housing for all of Colton’s family during this extremely turmoiling time. Anything will help!
MALIGNANT INFANTILE OSTEOPETROSIS: MIOP: Colton was diagnosed at just 8 weeks old with a rare bone disease called infantile osteopetrosis also known as "Stone Bone", "Marble Bone", or "Statue Bone". This is one of the rarest, most fatal forms of bone disease. Infantile form is often referred to as lethal. Most times when an infant is diagnosed with osteopetrosis it is often too late and those infants die within days or weeks of a diagnosis. Time is of the essence in these cases to prevent blindness(which Colton unfortunately developed at just shy of 3m), deafness, facial paralysis, strokes, seizures and ultimately death. It is by a mom well accustomed to parenting and knowing something was not “right” with her child and a pediatrician running additional testing that they found this diagnosis. Mom was prepared for the first transplant, but now that they are awaiting on a 2nd transplant and once being released home, having to be out of work for an additional year to care for Colton a new fundraiser has been set up, to help with the continuing expenses.
Below is Colton's full story, feel free to follow his journey on Facebook as well.
http://wtkr.com/2015/05/15/chesapeake-baby-battles-rare-condition/ Colton was born as, what seemed to be, a perfect, healthy baby boy. At 3 days old he had congestion, which can be normal, and it was left at that. His parents noticed that his breathing was getting worse to the point he had to breathe through his mouth. After many appointments with his pediatrician, his parents took him to the ER where he was diagnosed with bronchiolitis at just 3 weeks old. After a two day stay in the hospital, he was released home. His parents still very worried because his breathing still wasn't right. After approximately 2 different doctor's appointments and 5 different ER trips, he was re-admitted to the hospital at 6 weeks old. He was then diagnosed with neonatal rhinitis, a rare condition that some infants are diagnosed with. He was promptly started on a steroid regimen that immensely corrected his breathing. After 6 days he was released home on a Monday. Everything seemed fine and they finally had a happy and healthy baby... until...Thursday. That is when they noticed blood….mixed in his urine so mom promptly took him to his pediatrician where they tested his urine and ran a CBC on him. When the doctor called with the results the doctor told his parents not to Google or panic yet until they figure out if the results were due to lab error but that His platelet levels were low, and white blood cell count was high as well as he had an extremely low calcium level. They returned to the doctor the next morning to re run his blood work. They got the results back right away and they looked promising his platelets came up some but were still low, his white blood cell count had started to go down but his calcium level was still low. Since Colton had his 2 month appointment scheduled for Monday the doctor sent them home and told them to keep a sharp eye on him and that if he shows any signs of getting worse take him to the ER. At this point, he was sleeping all of the time and his milk intake was decreasing. So Saturday Mom kept a sharp eye on him. Saturday he slept all day and was force fed 3oz not taking more then 1/2oz to a 1oz at a time. At this point, they knew it was time to head back to the ER. Once in the ER and having told his extensive background to the resident, she went and grabbed her attending who promptly came in. You could see on her face, she was baffled. Nothing was adding up Colton’s blood levels were everywhere and she didn't even know where to begin. So she said “she would figure this out”. The hospital ran a ton of blood work ordered an ultrasound. As they were prepping Colton for his ultrasound last minute, the doctor changed her mind and did an x-ray of his stomach because his levels were still all over the board and the x-ray seemed OK, they eventually did an ultrasound. They decided to admit him to the hospital assigned GI, endocrinology and hematology to his case to get to the bottom of this. The next morning, the hospitalist came in to explain the doctors that will be coming in and that he will listen to them all and WE WILL figure this out. GI came in did his exam as well as endocrine. All of a sudden the resident that had been on Colton’s care since he was 6 weeks old came in to let his parents know when re-looking at the x-ray they noticed that both femurs were fractured. At this point, with them seeing the fractures, low calcium, and liver level they were thinking a bone disease and promptly ordered a full body scan. A few hours later the parents were given heart stopping news that their baby's body was covered in broken bones and were given the diagnosis of infantile osteopetrosis. Again, this is one of the rarest, most fatal forms of bone disease. Even though their baby is at CHKD none of the doctors knew ANYTHING. There has NEVER been a case here. So the doctors spent all night reaching out to leading hospitals around the country when they found an osteopetrosis clinic in the University of Minnesota. Colton now has a fighting chance since his diagnosis was so early due to a fluke x-ray. So now the family is in a scramble turning their lives upside-down to save baby Colton. Because mom still have two little ones at home, and Mom has left her position at work, to make the temporary move to Minnesota. The older siblings will remain in Va with their Aunt to keep as normal of a life for them as possible. The family will be making flights back and forth to and from Minnesota spending time with all her babies to let them know they are loved and not forgotten. Now for the ultimate reason behind this fund, rent and bills are going to still need paid both back home in Virginia and in Minnesota and with needing to be right by Colton’s side, it is becoming extremely tough to afford it all. We're asking for donations to ensure stable housing for all of Colton’s family during this extremely turmoiling time. Anything will help!
Organizer
Ginny Smith
Organizer
Norfolk, VA
