Mother of baby born with large birthmark details hurtful remarks

‘Hurt quickly changed to fear’: Mom of baby girl with a large birthmark on her face admits strangers’ cruel comments about it make her terrified about the abuse her child will face in the future

  • Amanda Leupenberg, 34, was frightened when her daughter Ever, now four months old, was born with a swollen eye and a large port wine stain birthmark
  • The mother, of Chicago, Illinois, and her veteran husband Chris Leupenberg, 33, said they have been shocked by people’s hurtful reactions to Ever’s appearance
  • Doctors believe the marking could be a sign of Struge-Weber syndrome, which causes an overabundance of capillaries near the surface of the skin 
  • Amanda, a mother of seven, said strangers often ask ‘what is wrong’ with Ever’s face, which she said made her fear for the little girl’s future 
  • But the mom said the reactions have made her determined to give her daughter confidence to ensure she can shrug off hurtful questions as she gets older

A mother whose baby was born with a large red birthmark covering the left side of her face has opened up about her little one’s life with the condition, and is determined to give her little one the confidence she needs to fend off hurtful remarks from strangers. 

Amanda Leupenberg, 34, was frightened when her daughter Ever, who is now four months old, was born with a swollen left eye and a large port wine stain birthmark.

The mother, of Chicago, Illinois, and her military veteran husband Chris Leupenberg, 33, said they have been shocked by people’s hurtful reactions to Ever’s appearance when their family is out and about.

Distinctive: Amanda Leupenberg, 34, was frightened when her daughter Ever, who is now four months old, was born with a swollen left eye and a large port wine stain birthmark

Condition: Doctors believe the marking could be a sign of Struge-Weber syndrome, a neurological disorder that causes an overabundance of capillaries near the surface of the skin

Support: The mom said the reactions have made her determined to give her young daughter confidence to ensure she can shrug off hurtful questions as she gets older

Doctors believe the distinctive marking could be a sign of Struge-Weber syndrome, a neurological disorder that causes an overabundance of capillaries near the surface of the skin.

The condition can have serious consequences. It can also affect the blood vessels in the brain, causing seizures and convulsions.

Amanda said the first weeks of Ever’s life were frightening. Doctors told her about the most serious cases of Struge-Weber, which include paralysis and strokes.

However, Ever’s parents were comforted by a specialist who advised them not to worry unless Ever begins to present other symptoms of the condition, besides her unusual marking. 

‘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 gave us every possible worst-case scenario including stroke, paralysis, and the need for 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 and that I should just enjoy my adorable baby girl, especially as she hasn’t had presented with any other tell-tale signs like seizures.

Comments: Ever’s parents said they have been shocked by people’s hurtful reactions to Ever’s appearance when their family is out and about

Shocking: Amanda, a mother of seven, said strangers often ask ‘what is wrong’ with Ever’s face, which she said made her fear for the little girl’s future

Confidence: ‘I’m not sure what the future holds for Ever but no matter what happens she will always be loved and told how special she is,’ Amanda said

‘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, which she said made her fear for the little girl’s future. 

Regular laser therapy used to treat Ever’s birthmark often leaves the baby with red marks, which Amanda worries could be mistaken for abuse by strangers.

But the mom said the reactions have made her determined to give her young daughter confidence to ensure she can shrug off hurtful questions as she gets older. 

‘At the beginning it was hard. I remember I was out with her in a restaurant and the waitress just said bluntly “What’s wrong with her?”‘ Amanda recounted.

‘I found that hurtful but that quickly changed to fear.

‘I realized she was going to get questions like this for the rest of her life and that scared me.

‘I realized as her mom it was my job to help her have confidence to deal with those questions as she grows.

‘After her laser treatments, she has a little bruising and is swollen and red so sometimes it looks like she’s been injured.

‘I’ve heard horror stories where people have called Child Protective Services on the parents of children like Ever, because they think they’ve been abused but thank God nothing like that has happened to us.

Markings: Regular laser therapy used to treat Ever’s birthmark often leaves the baby with red marks, which Amanda worries could be mistaken for abuse by strangers

Siblings: Amanda said her six other children don’t even notice Ever’s birthmark anymore and just see her for who she is. Ever is pictured with her brother Theodore, three

‘So far it’s mostly been people been people asking what’s wrong with her.

‘As she grows I just have to make her feel good about herself.

‘I think she’s so strong and beautiful and I want to instill that in her.’ 

The mom said her children Kaden Salvo, 15, Zachery Salvo, 12, Kyle Salvo, 11, Liam Leupenberg, six, Theodore Leupenberg, three, and stepdaughter Jade Leupenberg, don’t notice their little sister’s birthmark anymore and just see her for who she is. 

‘We have such a busy, crazy house,’ Amanda said.

‘My kids just don’t even see 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.’

Keen to empower her youngest daughter, Amanda founded Ever Grey Designs, a company which creates clothing which inspires children to love their differences.

The designs are stamped with cartoon characters including a polar bear with a birthmark like 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 feel the same way so I started creating shirts with different characters,’ Amanda added.

‘Each character represented a child that may be a little different than their peers. I wanted to show characters that embrace their differences.

‘I’m not sure what the future holds for Ever but no matter what happens she will always be loved and told how special she is.’ 

Source: Read Full Article