“The bond between mother and child is an unbroken circle and each new sibling keeps the wheel turning.”
Stories abound of mothers willing to sacrifice their lives for their children, but sometimes the bond between siblings is just as strong. Brothers, Logan Collins age 10 and Ethan Collins 8 of Dardanelle, have that kind of bond. Ethan is very protective of his brother. Logan has Down syndrome, which is complicated by thyroid problems and defects in his ears and teeth. But, more serious yet is Logan’s diagnosis of a variation of NEMO (NF-κB Essential Modifier,) a fatal chromosome disorder that attacks his immune system and systematically destroys his body.
“NEMO is terminal because one day he will eventually get an infection his body can no longer fight,” said their mother, Teri Collins Kuras. Teri learned of Logan’s additional diagnosis last year while he was being tested for allergies because all his hair was falling out. While there, the doctor noticed certain features about Logan that he found odd and tested Logan for three rare genetic disorders. The NEMO test came back positive, but with a variation in one of the markers. There has not yet been anyone else tested with the same results. Logan’s results are kept in a national database in the hopes that when someone else has the same results, they can find similarities and/or possible causes and treatments.
The only known cure for NEMO at this time is a dangerous and painful bone marrow transplant with the best possible match coming from a full sibling. When Ethan found out he might save his brother’s life with the bone marrow transplant, the then seven-year-old bravely offered to cut off his arm to donate his bone marrow to Logan.
“Ethan said he would die for him because that’s his brother,” said Teri, who also has a 3 year old half-sister to the boys, Caysen Kuras. “All my children are healthy except Logan,” she added.
“Ever since Ethan was old enough to understand Logan was different, he’s been a fearless protector of his older brother. The bond between Logan and Ethan is so crazy they still sleep together every night. Ethan has become this amazing sympathetic soul and there is nothing he would not do for his brother,” said Teri.
“Ethan even offered to give one of his baby teeth to Logan so the “tooth fairy” would put money under Logan’s pillow,” said Teri. Logan has only has three permanent teeth because he suffers from Ectodermal Dysplasia, another complication of NEMO.
The cause of NEMO is unknown at this time and Teri does not carry any markers for Down syndrome. However, she said she had been very sick just before she conceived Logan and wondered if the radiation she was given affected Logan’s chromosomal disorders.
“Only 30 people in world have NEMO, and Logan is the only person with this variation,” said Teri.
Despite her worries as a mother, Teri has managed to maintain a positive outlook.
The only known cure for NEMO at this time is a dangerous and painful bone marrow transplant with the best possible match coming from a full sibling. When Ethan found out he might save his brother’s life with the bone marrow transplant, the then seven-year-old bravely offered to cut off his arm to donate his bone marrow to Logan.
“Ethan said he would die for him because that’s his brother,” said Teri, who also has a 3 year old half-sister to the boys, Caysen Kuras. “All my children are healthy except Logan,” she added.
“Ever since Ethan was old enough to understand Logan was different, he’s been a fearless protector of his older brother. The bond between Logan and Ethan is so crazy they still sleep together every night. Ethan has become this amazing sympathetic soul and there is nothing he would not do for his brother,” said Teri.
“Ethan even offered to give one of his baby teeth to Logan so the “tooth fairy” would put money under Logan’s pillow,” said Teri. Logan has only has three permanent teeth because he suffers from Ectodermal Dysplasia, another complication of NEMO.
The cause of NEMO is unknown at this time and Teri does not carry any markers for Down syndrome. However, she said she had been very sick just before she conceived Logan and wondered if the radiation she was given affected Logan’s chromosomal disorders.
“Only 30 people in world have NEMO, and Logan is the only person with this variation,” said Teri.
Despite her worries as a mother, Teri has managed to maintain a positive outlook.
“People often don’t know what to say to you when they find out you have a sick child, but I’m not looking for sympathy. Just as I love my other children, I love Logan just the way he is. Logan has definitely taught me a lot more things in life than he would have if he had been the Logan I had anticipated before he was born,” said Teri, who did not find out about Logan’s condition until 45 minutes after he was born.
“Of course, there is a grieving process you have to go through before you can move on, but you quickly learn to accept your child’s limitations and love them completely,” said Teri. “I’ve had people reach out to me who also have children with disabilities and we immediately bonded. A lot of our experiences are the same so it’s like we are all part of one big family.”
To keep that camaraderie going and draw attention to children with Down syndrome, autism and all disabilities, Teri started Logan’s River Walk four years ago. This year’s Walk will be in October, at Veteran’s Memorial Park in Dardanelle. Pre-registration starts in June.
Walkers of all ages and abilities are welcome to participate and Teri encourages healthy children to come so they can learn about disabilities of other children.
“It’s a really beautiful moment when you take off on the walk and have 400 people behind you!” said Teri.
Teri also wants to start an afterschool/ summer facility for disabled children and the Dardanelle School District is working with her on that.
“Regular day care facilities do not accept special needs children in this area. Having a facility like that would open up a thousand possibilities for these parents,” said Teri.
What is Down syndrome?
“Of course, there is a grieving process you have to go through before you can move on, but you quickly learn to accept your child’s limitations and love them completely,” said Teri. “I’ve had people reach out to me who also have children with disabilities and we immediately bonded. A lot of our experiences are the same so it’s like we are all part of one big family.”
To keep that camaraderie going and draw attention to children with Down syndrome, autism and all disabilities, Teri started Logan’s River Walk four years ago. This year’s Walk will be in October, at Veteran’s Memorial Park in Dardanelle. Pre-registration starts in June.
Walkers of all ages and abilities are welcome to participate and Teri encourages healthy children to come so they can learn about disabilities of other children.
“It’s a really beautiful moment when you take off on the walk and have 400 people behind you!” said Teri.
Teri also wants to start an afterschool/ summer facility for disabled children and the Dardanelle School District is working with her on that.
“Regular day care facilities do not accept special needs children in this area. Having a facility like that would open up a thousand possibilities for these parents,” said Teri.
What is Down syndrome?
One in every 691 babies in the United States is born with Down syndrome, the most common chromosomal abnormality found in the general population.
Physical traits of Down syndrome are easy to spot in newborns and infants and include an upward slant to the eyes, low muscle tone, small stature, and a single deep crease across the center of the palm. Developmental delays always accompany the condition and people with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, thyroid conditions, childhood leukemia and Alzheimer’s disease, according to the National Down Syndrome Society (NDSS).
Despite the serious problems facing children with Down syndrome and their families, those with the condition attend school, work, participate in decisions that affect them, and contribute to society in wonderful ways.
To help fight this disease and show your support of this and other childhood disabilities, join us for upcoming 2013 Logan’s River Walk. To learn more call 479-453-0041 or email riverwalk0110@yahoo.com. Early registration begins in June, 2013.
Physical traits of Down syndrome are easy to spot in newborns and infants and include an upward slant to the eyes, low muscle tone, small stature, and a single deep crease across the center of the palm. Developmental delays always accompany the condition and people with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, thyroid conditions, childhood leukemia and Alzheimer’s disease, according to the National Down Syndrome Society (NDSS).
Despite the serious problems facing children with Down syndrome and their families, those with the condition attend school, work, participate in decisions that affect them, and contribute to society in wonderful ways.
To help fight this disease and show your support of this and other childhood disabilities, join us for upcoming 2013 Logan’s River Walk. To learn more call 479-453-0041 or email riverwalk0110@yahoo.com. Early registration begins in June, 2013.
