Girl, 7, forced to hide from sun and completely cover skin after life-changing diagnosis

Parents of a seven-year-old girl with a rare disorder have spoken out about the day their 'world came crashing on top of' them.

After their two-year-old daughter Adeline came back from a summer camping trip with a red mark on the back of her leg, parents Megan Dunn and Kurt Tonhaeuser from Hartford, Wisconsin initially dismissed it as 'nothing more than a simple bug bite' likely from 'the sandbox she was playing in'.

Little did they know, their lives were about to be 'forever changed'.

Adeline was diagnosed with the condition at the age of two (Porphyria Foundation)

Several days past and little Adeline's red mark was joined by a series of 'small blisters on her hands and her toes' and later on her face, leading to the parents' concern 'growing'.

They took their toddler to a paediatrician who diagnosed Adeline with impetigo - a skin infection which can typically be treated with antibiotics. However, after taking a course of antibiotics, there was 'no improvement' and the blisters kept appearing.

On July 27, 2017, the Tonhaeusers took Adeline to a pediatric dermatologist and that's 'the day that forever changed [their] lives'.

"The day our world come crashing on top of us. The day that made our world come to a screeching halt," the parents' post to American Porphyria Foundation's website continues.

Adeline has to be fully protected from sunlight and artificial light too (Porphyria Foundation)

The Tonhaeusers revealed they were told Adeline 'may be having a severe reaction to the sun'.

The post continues: "That day we heard words like heme, porphyria, genetic condition [...] The doctor ordered some immediate lab work.

"We left the dermatologists office in a cloud of confusion, making sure we remembered exactly what she said but not understanding one word amid our disbelief.

"After hours of searching for information and reading anything and everything on CEP and seeing the pictures of those inflicted with the disease, it felt harder and harder to breathe.

"We just wanted this to be a bad dream because no parent should have to read that. We waited an entire week for the results of the tests, hoping and praying it was not this terrible disease. A disease so rare that there are only around 300 documented cases in medical journals."

Devastatingly, their 'worst fear' was confirmed - Adeline tested positive for Congenital Erythropoietic Porphyria (CEP).

Adeline's parents are raising awareness of the condition (Porphyria Foundation)

CEP is a 'very rare inherited metabolic disorder' which is caused by a gene mutation. Symptoms typically start in infancy or childhood and the 'major symptom' is 'hypersensitive of the skin to sunlight and some types of artificial light' - exposure of which can lead to lesions which can become infected and lead to 'scarring, bone loss and deformities,' Porphyria Foundation explains.

Adeline's parents explain their 'beautiful baby girl cannot be exposed to any UV light without suffering horrible consequences'.

They added: "From that day forward, her life changed as did our entire world. We now must do whatever it takes to protect Adeline."

Until there is a cure for CEP, they say 'for the rest of Adeline's life' she will 'need to avoid UV light' not just from the sun but artificial light too and has to be completely covered as much as possible - spending recess at school in an indoor room and her time outside extremely limited.

Megan told Today: "She makes it well known to us that she hates the disease. [...] She wants to be normal, and she wants to go outside and play like the other kids."

However, the mom resolved: "We just keep going. You can’t look back. We just keep moving forward."

You can find out more on the American Porphyria Foundation's website and donate to help those affected.