The 16-month old Lock Samples is only one of the approximately 100 known cases of this extremely rare syndrome that causes high fragility of the hair.
When he was born, he had black hair, not too different from that of his mom Katelyn’s hair color. However, by the time he was 6 months, his dark hair transformed into what his mom and dad called “peach fuzz”.
Their Son Is Diagnosed with a Rare Hair Syndrome but Is otherwise Healthy
His parents were confused about the newly soft blond hair of their son nicknamed Lock. They were aware that his hair was different but weren’t sure in which way.
Lock’s hair kept growing and growing.
By the time he was 9 months, he had white-blond and very soft hair that stuck straight up from the head. It had a similar color to that of the hair of his three-year-old brother Shep, but they differed a lot in texture.
The 33-year-old Katelyn from Roswell, Georgia says that people started to notice the boy’s hair and this is when she got a message from an Instagram user who asked if Lock had uncombable hair syndrome.
She didn’t have a clue about it and started to worry that something may be wrong with her son. She then started googling and also called the boy’s pediatrician.
He said he’s never heard of this syndrome and advised them to go to a specialist in an Emory Hospital that was nearby.
One Of The Rarest Hair Syndromes
When they went to see the doctor, she told them that she had only seen this condition once in 19 years. At first, she wasn’t sure if it was uncombable hair syndrome due to its rarity, but after the samples were inspected by a pathologist, it was confirmed.
This condition causes hair growth that’s soft and easily breakable. And, Lock is one of the 100 cases that are known to have this condition. The family was in shock at first after the boy’s diagnosis.
They explain that you go about your day thinking that it’s all okay and that your child may just have curly hair that also runs in their family, but it was a bit crazy to hear that your kid actually has a rare syndrome.
It’s Cool to Be a bit Different
Luckily, it only affects the child’s hair. The doctors told them that Lock is developing well in other areas of his life so there’s no need for concern. Although his mom tried to learn more about the condition, the information available is scarce.
She became a member of a Facebook group with parents of children with the syndrome and people who have it. This has been comforting for the family as they share photos and discuss different things.
Lock’s hair hardly has to be washed since it doesn’t get greasy. It’s very soft and people want to touch it all the time. His mom rarely brushes it because it’s quite breakable.
98 percent of people, according to Katelyn, are kind and loving when they learn about Lock’s hair and they say that he’s like a rock star putting smiles on people’s faces.
The family is doing their best to teach their kids to be more confident regardless of their differences. For them, it’s cool that their son stands out a bit.