“Small Improvements Are Slowly Occurring”: Mom Of Boy With Sturge-Weber Syndrome Shares Update
Interview
Kingsley Colvin was only five months old when he started receiving laser treatment for his birthmark on his face.
The boy, now two years old, was born with Sturge-Weber syndrome, a rare neurological condition present at birth, characterized by a birthmark—known as a port-wine stain—often located on one side of the face.
In the month of awareness for the Sturge-Weber and Vascular Birthmark Foundations, Kingsley’s mother, Brooke Atkins, spoke with Bored Panda about the challenges that young Kingsley is facing, as well as her activism in raising awareness for the condition.
- Kingsley Colvin, born with Sturge-Weber syndrome, started laser treatments at five months old to fade his port-wine stain birthmark.
- The rare neurological condition causes seizures, muscle weakness, glaucoma, developmental delays, and cognitive impairment.
- The two-year-old is showing improvement in managing his seizures with medication, but still faces risks including potential future brain surgery.
- The boy's mom, Brooke Atkins, collaborates with the Sturge-Weber Foundation and other support networks, helping families with similar conditions.
“Since having him, I have learned more about myself than I have in the 35 years of being alive,” said Brooke, who is also the mother of four-year-old Amarni. “Patience, acceptance, love, kindness, appreciation, and the importance of family. How strong I can be in my worst, most heartbreaking, vulnerable moments.”
Kingsley Colvin was born with Sturge-Weber syndrome, a rare neurological condition characterized by a port-wine stain birthmark, often located on one side of the face
Image credits: kingsley_colvin
Port wine stains result from abnormally formed capillaries (tiny blood vessels under the skin) and can vary in color from light pink to deep purple.
These birthmarks aren’t that uncommon—about 3 in 1,000 babies are born with one. Still, only 6% of newborns with port-wine stains will have neurological symptoms, including seizures, muscle weakness, glaucoma, developmental delays, and cognitive impairment.
“As it only affects 1 in 50,000 people, it is definitely not widely known,” the mother-of-two said. “I myself had never heard of it prior to his birth. We still meet a lot of medical professionals who haven’t heard of it, either.”
The cause of Sturge-Weber syndrome is a mutation in the GNAQ gene. This type of gene mutation occurs randomly in the developing embryo and is not hereditary, the Cleveland Clinic notes. With appropriate treatment, many people live a healthy life with SWS.
At five months old, Kingsley underwent his first laser procedure to shrink the blood vessels on his face and fade the birthmark
Image credits: kingsley_colvin
The only way to treat a port-wine stain is with laser skin resurfacing.
When Kinglsey was born, Brooke and her partner were referred to the Queensland Children’s Hospital Dermatology and Vascular Department in Australia, where they organized the first treatment.
So far, the boy has undergone four treatments with numbing cream and one under general anesthetic.
“He has reached maximum clearance. Thankfully, his birthmark responded quite well to the treatments,” Brooke explained.
“Because we started these treatments early, it gives him the best chance of not developing future complications with it, for example, cobblestones, growths, vascular blebs, further damage to his eyesight, darkening and thickening [of the birthmark].
“He will, however, require one to two laser treatments a year to help maintain his progress.”
“I myself had never heard of it prior to his birth. We still meet a lot of medical professionals who haven’t heard of it, either,” said Brooke Atkins, the toddler’s mom
Image credits: kingsley_colvin
Laser treatments help shrink the blood vessels and fade the birthmark, preventing further damage in the area.
However, Brooke wishes she had learned about her son’s condition earlier to start treatment as soon as possible.
“If [I] had known about treatments earlier and the benefits of it, we would’ve started from four weeks old,” the 35-year-old said. An investigation published in JAMA Dermatology shows that starting treatments as early as five days old helps prevent the need for general anesthesia as much as possible and can maximize the likelihood of clearance.
The rare condition presents neurological symptoms such as seizures, muscle weakness, and glaucoma
Image credits: kingsley_colvin
When Kingsley underwent his first laser treatment, Brooke faced harsh judgment and was labeled a “monster” on social media after she shared the news on TikTok.
In addition to coping with the emotional distress of her son’s condition, she had to endure reading hundreds of messages accusing her of subjecting her son to an unpleasant procedure solely for cosmetic reasons.
Initially, the comments deeply affected Brooke, bringing her to tears at the thought of making her child suffer. However, she eventually learned to ignore the abuse, redirecting critics to informational sites about the condition and reassuring herself that she had made the best decision for her son.
“He has reached maximum clearance. Thankfully, his birthmark responded quite well to the treatments,” Brooke explained
Image credits: kingsley_colvin
Kingsley is showing improvement in his seizures, thanks to anticonvulsant medication.
“Kingsley’s seizures will be a lifelong battle, unfortunately, as will his glaucoma. We recently had three months between seizures, which is the longest period without them, so small improvements are slowly occurring,” the mom shared.
“If medication fails, resulting in Kingsley’s seizures flaring up again and we have days on end of uncontrollable seizures, a procedure could occur, where they can remove part of his brain.
“His brain will continue to change over time, and we never know what the future holds.”
For people with Sturge-Weber syndrome, convulsions usually happen on the side of the body opposite the birthmark and vary in severity, the NIH (National Institute of Neurological Disorders and Stroke) explains.
Kingsley recently achieved a milestone by going three months without experiencing any seizures
@brookecyn♬ Surrender – Natalie Taylor
For Brooke, seeing her child convulse is “a living nightmare over and over every time it happens.”
Kinglsey has undergone three surgeries on his eye to treat his glaucoma, a condition in which the pressure inside the eyeballs is high and can cause pain, swelling, and vision loss. According to the Cleveland Clinic, people with port-wine stains around their eyes may have a higher risk of having an eye condition.
“Recently, he was put on another lot of eye drops, but we are hopeful they will help, on top of the eye drops he was already on. If his glaucoma were to worsen, he would continue to receive surgeries until the pressures are in the normal range.
“Unfortunately, he will always have the chance of going blind in his left eye.”
After sharing her son’s journey on social media, Brooke has received many messages from fellow parents whose children also have SWS, seeking her advice and support.
The mother works closely with the Sturge-Weber Foundation and the Vascular Birthmark Foundation, two support networks dedicated to raising awareness for the disease and gathering funds for research and family support. Additionally, Brooke collaborates with 1in25, a group committed to supporting the epilepsy community.
The mother collaborates with support networks for children with SW syndrome and epilepsy, such as the Sturge-Weber Foundation, the Vascular Birthmark Foundation, and 1in25
@brookecyn @Mel Garcia Thank you to the team at 1in25, for designing and printing these beautiful t-shirts for my son🤍1in25 is a group dedicated to helping the epilepsy community and one way they do that is choose 3 warriors of the month and create beautiful tees for them! $5 from each shirt sold goes directly to the family, to help with their struggles and difficult journey. We are so thankful for them in more ways than we can say! Kingsley was 1 of 3 chosen for the month of April, so these tees are available only for a couple more weeks❤️If you would like to support our little warrior, please find the link in my profile🥰Thank yoooou x #epilepsy #epilepsyawareness #1in25 #seizures #sturgewebersyndrome #sws ♬ Dandelions – Ruth B.
“I continue to show my support by taking part in online events like Million Miles Walk (raising funds by walking for the SWF), taking part in awareness months, raising money on Day of Giving (May the 15th) for VBF, participating in anything they have online and using my platform to share any fundraisers to encourage people to participate in events or give a little,” the Gold Coast mom shared.
As parents will never grow accustomed to seeing their children in a hospital bed, Brooke wants to remind them that they’re not alone in this experience.
“I hope they know there is so much support out there and a big wide community going through the same journey who are there for you.
“Although it can be difficult, it can also change you as a person. It’ll make you stronger than you ever thought, make you appreciate life so much more, and never again take family time for granted.
“I honestly found a whole other side of me I didn’t know existed. I’m a better person because of my children.”
People defended Brooke after critics judged her decision to make her son start laser treatment
People who feel it's bad to remove it live in a fairytale world (and probably don't have kids, or they are perfect or they are the bullies). In theory, a child shouldn't be bullied or mocked for their appearance, so you wouldn't need to remove a birthmark to prevent that, but in real life, it happens. A lot. And so it's better to prevent it, if you can.
Not to mention those types of birthmarks can get so bad! They can block the vision and cause swelling among other things.
Load More Replies...
Schoolmate's dad had one. Apart from the cosmetics, the skin is very vulnerable, easily wounded, easily inflamed. 45 years ago they did not have the laser technology, otherwise I know he would have gone for that just to have 'safe' skin.
My mum has one. She still faces issues with it- once when she went to give blood the nurse was like "what's that rash? You know you can't donate if you have a rash, it's in the rules" in a really blunt and rude way.
Load More Replies...
I guess the real monsters are those who blame a mother for doing the right thing for her kid. Probably bullies or former bullies who don't like to be deprived of a """good reason""" to annoy a poor fellow kid. /s
People who feel it's bad to remove it live in a fairytale world (and probably don't have kids, or they are perfect or they are the bullies). In theory, a child shouldn't be bullied or mocked for their appearance, so you wouldn't need to remove a birthmark to prevent that, but in real life, it happens. A lot. And so it's better to prevent it, if you can.
Not to mention those types of birthmarks can get so bad! They can block the vision and cause swelling among other things.
Load More Replies... Schoolmate's dad had one. Apart from the cosmetics, the skin is very vulnerable, easily wounded, easily inflamed. 45 years ago they did not have the laser technology, otherwise I know he would have gone for that just to have 'safe' skin.
My mum has one. She still faces issues with it- once when she went to give blood the nurse was like "what's that rash? You know you can't donate if you have a rash, it's in the rules" in a really blunt and rude way.
Load More Replies... I guess the real monsters are those who blame a mother for doing the right thing for her kid. Probably bullies or former bullies who don't like to be deprived of a """good reason""" to annoy a poor fellow kid. /s
68
22