This girl was born with an extremely rare genetic skin disease. It causes her skin to grow at TEN TIMES the rate of a regular child – leaving her with scaly skin that strangers mistake for burns.
Lawyer turned stay at home mum Carla Brown (53) from Chicago, USA, was the oldest of eight kids growing up.
Eager to have a large family of her own, Carla and husband Paul (55) had six children and still wanted more.
Carla and Paul decided to travel to a Ukrainian orphanage to adopt Henry in 2011 and then three more children, Violet (18), Leo (10) and Yana (8) in 2013. However, tragedy struck the family when Henry contracted the superbug MRSA and died in November 2012 aged just two and a half.
In June 2020, Carla discovered a post on Facebook by an adoption agency who were looking for a family to adopt a one-month-old girl with harlequin ichthyosis – an extremely rare genetic condition where a baby is born with thick plates of skin covering the body and face. In severe cases a person’s skin can grow at a rate ten times faster than normal.
The family adopted the girl with the skin disease
Conducting her own research into the unfamiliar condition, Carla presented her case to Paul who agreed that they should go ahead and inquire with the adoption agency.
The very next day the agency responded to their request and asked if they wanted to make Hanna Rose (10 months) part of their family. Carla and Paul agreed and travelled to Atlanta to bring their new daughter home to Chicago.
Within two weeks of returning home, Hanna was rushed to ICU with a bacterial infection due to her condition. With her blood pressure plummeting, her kidneys shutting down and her temperature dropping to just 32.7 degrees Celsius, doctors told Carla and Paul that they didn’t expect Hanna to live past the first 48 hours in hospital. However, after 53 days, Hanna was finally able to return home to her family.
Not an easy task to care f the baby
According to Carla, caring for a baby with harlequin ichthyosis is no easy task. Hanna’s thick scaly skin requires two hour-long baths per day as well as the application of prescription creams every three hours both day and night to prevent the skin cracking.
Hanna has deformities in her fingers and toes which occurred as a result of the thick layer of scaly skin stunting their growth in her early life. She is also partially deaf due to the skin in her ears shedding and blocking her ear canals.
Despite the challenges that Hanna faces and will continue to face in the future, Carla and Paul are determined for Hanna to live as regular a life as possible and will confront each challenge head on.
“Caring for Hanna at home is exhausting, as she needs an hour-long bath twice per day and then has to be covered in skin care ointments every three hours day and night to sooth her dry, blistering skin.
The girl with the skin disease’s skin is so tight that it’s currently difficult for her to roll over.
“Her disability is very obvious, as her skin is bright red and her fingers and toes are slightly deformed.
“I went out to breakfast the other day and the waitress asked, ‘did your baby get burned?’
“I corrected her and let her know that Hanna actually has a rare genetic condition, but these are the types of questions Hanna will get asked herself one day.
“One child of a friend in preschool first meeting her said ‘I am scared of her, she looks scary’, but by the end of the visit said, ‘oh she is such a cute baby’.
“I’ve talked to other mums of children with harlequin ichthyosis and they’ve been at the park and had other children run away or point and that’s obviously going to be a challenge as she gets older.
“But like every other challenge we’ve faced, we’re going to face it head on.”
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