Mum spends hours per day bathing daughter due to rare condition

A mum has spent a thousand hours and over 500 baths treating her nine-month-old with a rare condition that causes her skin to grow up to ten times faster than normal.

Baby Anna, from Highland, New York, USA, suffers from Harlequin Ichthyosis – a gene mutation leading to long-term itching and discomfort.

Her reddish skin has a hard texture, sheds on a daily basis and it is often difficult to close her eyes at night.

The risk of death for Harlequin Ichthyosis newborns is high because infections tend to spread very fast and there is a high chance of respiratory failure.

Mum-of-three Jennie, 33, spends at least four hours a day giving the tot two baths in addition to applying Aquaphor to her skin every six hours and treating her with an Aloe-based lotion once a day.

Nine-month-old Anna takes two-hour long baths twice a day to manage her skin condition. Source: Caters

“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,” Jennie said.

The dedicated parent has stopped working as a farmer to care for her daughter full-time. Her methods have reduced the severity of the condition and now she gets comments from strangers about how “beautiful” Anna is.

“The lotions I treat her with basically moisturise and exfoliate her skin and eyes,” Jennie 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.”

The disease is very rare, affecting one in every 500,000 births and according to Jennie, it was very hard to find information about the condition, even at a specialised conference.

A mum has spent a thousand hours and over 500 baths in a desperate attempt to keep her nine-month-old alive after being diagnosed with a fatal condition. Source: Caters

“At the Ichthyosis conference I went to, a doctor was asking the parents questions instead of giving us information,” she said.

But when Anna was a month old, Jennie discovered Ichthyosis support groups on social media, which have given her the opportunity to speak to many other parents whose children suffer from the disease.

“These kids just have extra skin. They can do so many things that other children can. I wouldn’t have realised that if I wasn’t always talking to the mums,” Jennie said.

Jennie has also noticed the positive response from the public thanks to taking it upon herself to share information with them.

“We used to get negative comments here and there, but those stopped after I started educating everyone about her condition,” she said.

Dr Anton Alexandroff of the British Skin Foundation says the application of creams and lotions is necessary for calming the disease.

“The condition requires regular moisturising throughout the day and medication called retinoids may help to control it,” he said.

“Patients cannot sweat and regulate fluid loss, which may result in dehydration and heat stroke.”

To donate to Anna’s fundraiser visit her GoFundMe page.

With Caters