A mother whose baby was born with a large red port-wine stain birthmark covering the left side of her face has opened up about her little girl’s journey, determined to give her the confidence to face hurtful comments from strangers as she grows.
Amanda Leupenberg, 34, was frightened when her daughter Ever, now four months old, was born with a swollen left eye and a large port-wine stain birthmark.
The mother, from Chicago, Illinois, and her husband Chris Leupenberg, 33, a military veteran, have been 𝗌𝗁𝗈𝖼𝗄𝖾𝖽 by some of the reactions Ever receives when their family goes out in public.

Doctors believe the distinctive birthmark could be associated with Sturge-Weber syndrome, a neurological condition involving an unusual concentration of blood vessels near the surface of the skin.
The condition can sometimes have serious complications, affecting blood vessels in the brain and potentially leading to seizures and other neurological challenges.
Amanda said the first weeks of Ever’s life were frightening. Doctors explained some of the most serious possibilities associated with Sturge-Weber syndrome, including paralysis and strokes.

However, Ever’s parents found reassurance when a specialist advised them not to focus on what might happen unless their daughter began showing additional symptoms beyond her distinctive birthmark.
“When she was born and they handed her to me, I could see that her eye was really swollen. It looked like it was almost going to pop out,” Amanda said.
“She had what looked like bruising all over her eye.
“The doctor at the hospital thought it could be Sturge-Weber syndrome and explained every possible worst-case scenario, including stroke, paralysis and the possibility of lifelong care.

“When we were finally able to see a specialist, she put my mind at ease and told me I should try not to worry about what could happen. Instead, I should enjoy my adorable baby girl, especially as she hadn’t shown any other signs, such as seizures.
“I was feeling better until we took her out for the first time.”
Amanda, a mother of seven, said strangers often ask what is wrong with Ever’s face, and their comments have made her worry about the challenges her daughter might face in the future.

Regular laser treatments to help manage Ever’s birthmark can leave her skin temporarily red, swollen and marked, something Amanda worries strangers might misunderstand.
But rather than allowing these reactions to discourage her, the mother has become determined to raise a confident little girl who will know how to handle hurtful questions as she grows older.
“At the beginning it was hard. I remember I was out with her in a restaurant and the waitress just bluntly asked, ‘What’s wrong with her?’” Amanda recalled.

“I found that hurtful, but that quickly turned into fear.
“I realized she was going to get questions like this throughout her life, and that scared me.
“I realized that, as her mom, it was my job to help her build the confidence to deal with those questions as she grows.

“After her laser treatments, she has some temporary marks and swelling, so sometimes people might misunderstand what they see.
“I’ve heard stories of people contacting Child Protective Services about parents of children like Ever because they mistakenly believe something has happened to them. Thankfully, nothing like that has happened to us.
“So far, it’s mostly been people asking what’s wrong with her.
“As she grows, I just have to make sure she feels good about herself.
“I think she’s so strong and beautiful, and I want to instill that in her.”

Amanda said her children, Kaden Salvo, 15, Zachery Salvo, 12, Kyle Salvo, 11, Liam Leupenberg, six, Theodore Leupenberg, three, and stepdaughter Jade Leupenberg, have grown so accustomed to their little sister’s birthmark that they simply see her as Ever.
“We have such a busy, crazy house,” Amanda said.
“My kids don’t even notice Ever’s birthmark anymore. They just see Ever for the beautiful baby she is.
“She’s lucky to be surrounded by such supportive brothers and sisters.”
Determined to empower her youngest daughter, Amanda founded Ever Grey Designs, a company that creates clothing designed to encourage children to embrace what makes them different.

The designs feature cartoon characters, including a polar bear with a birthmark similar to Ever’s and a raccoon with a prosthetic leg.
“I quickly realized that if I wanted something to empower my daughter, there must be other parents who felt the same way. So I started creating shirts with different characters,” Amanda added.
“Each character represented a child who might look a little different from their peers. I wanted to create characters who embrace their differences.
“I’m not sure what the future holds for Ever, but no matter what happens, she will always be loved and reminded of how special she is.”