A mother has shared how she spends at least two hours a day bathing her baby to treat her rare condition.
It was in June 2020 when Carla Brown and her husband Paul adopted Hanna Rose, who was born with harlequin ichthyosis, a condition that causes the skin to grow up to 10 times faster than normal.
Despite the mortality rate for children with the rare condition being 50 percent for those under the age of 1, little Hanna managed to defy the odds.
“She needs an hour-long bath twice per day and then has to be covered in skincare ointments every three hours day and night to soothe her dry, blistering skin,” Carla said.
The mother shared that when considering adopting their child, she started researching the condition. I knew it would be a challenge, but if anyone has the experience to cope with cases of severe special needs, it’s us.
“I also saw the amazing people with the condition who had gone to do great things – like Mui Thomas from Hong Kong who became a rugby referee, which I thought was wonderful.”
Carla told her husband that they have ‘found their girl’ and they drove from Chicago to Atlanta to pick Hanna up.
Photos of Hanna in hospital show her tight skin, with eyelids turned inside out.
Only weeks after Carla and Paul welcomed her into the family, Hanna was rushed back into hospital with a bacterial infection.
Carla said caring for a baby with harlequin ichthyosis is not easy. “Her 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’,” Carla shared.
“I’ve talked to other mothers 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.”
Carla and Paul are also parents to Tessa, 12, Logan, 14, Ella, 16, Sabrina, 21, Luke, 27, and Brent, 28.
The couple said that adopting children with special needs has been the most rewarding aspect of their lives.
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