A New York mother is receiving much-deserved recognition for her daily sacrifices for her young daughter.
Jennie, a mother of three, spends four hours every day just bathing her 9-month-old daughter Anna, the Daily Mail reports. Anna suffers from harlequin ichthyosis, a rare skin condition that causes the infant’s skin to grow rapidly and shed daily. The disease heightens her risk of infection and other health problems.
When she gave birth, Jennie said she was warned that Anna may not live long. Doctors said babies with the disorder often die of infections within a few weeks of birth, and there is no cure.
“When they told me there was a chance she wouldn’t survive, I decided that wasn’t an option. I’m not going to watch my child die,” she said.
Every day, Jennie said she bathes Anna to make her more comfortable, then she rubs her with lotions to moisturize and exfoliate her skin.
“When she’s in the water, she’s very comfortable and she usually remains like that for a while after a two-hour long bath,” she said. “She is starting to scratch herself a little, but for the most part she remains in good spirits. She’s a very happy baby.”
Jennie said there is not much research and information about Anna’s disease, but she has been able to find tips and encouragement from online support groups for people with harlequin ichthyosis.
“These kids just have extra skin. They can do so many things that other children can. I wouldn’t have realized that if I wasn’t always talking to the mums,” Jennie said.
The devoted mother said she also feels encouraged when strangers stop to tell her how beautiful Anna is.
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“Having strangers stop and recognize her as a ‘normal’ baby has made me realize how much the work I’ve put into treating her has already made a difference,” she said.
She shared their story in hopes of raising awareness about her daughter’s condition and urging researchers to find a cure.
But the family’s story also demonstrates the incredible power of a mother’s love and the value of every child, no matter what their abilities.