BY NICOLAS FERNANDES
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.
Anna, from New York, USA, suffers from Harlequin Ichthyosis – a gene mutation leading to long-term itching and discomfort.
The baby’s reddish skin has a hard texture, sheds on a daily basis and her eyes are often difficult to close 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.
The dedicated parent has stopped working to care for her daughter full-time and plans to do everything possible to keep her alive and improve her quality of life.
The mother’s treatment methods have reduced the severity of the condition and now she gets comments from strangers about how “beautiful” Anna is.
Jennie, a farmer, said: “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.
“The lotions I treat her with basically moisturise and exfoliate her skin and eyes.
“She is starting to scratch herself a little, but for the most part she remains in good spirits. She’s a very happy baby.
“Most newborns don’t survive with this, so we were very cautious with her.
“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.
“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.”
Jennie says the scariest part of the journey so far has been the lack of information available.
Since the disease is so rare, affecting one in every 500,000 births, many doctors aren’t even knowledgeable about it.
The mum said: “For the first month of Anna’s life, I could hardly find any information about the condition.
“At the Ichthyosis conference I went to, a doctor was asking the parents questions instead of giving us information.”
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 who’s children suffer with the disease.
She credits these parents as the reason she has learned so much and has been able to gain hope.
Jennie said: “Now I feel like it’s easier. I talk to the moms from all around the world and they give me tips about what I should do.
“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 moms.”
Jennie has also noticed the positive response from the public thanks to taking it upon herself to share information with them.
She said: “We used to get negative comments here and there, but those stopped after I started educating everyone about her condition.
“Now that I’m open about it, the whole town knows Anna and they always have nice things to say.”
Dr. Anton Alexandroff of the British Skin Foundation says that the application of creams and lotions is necessary for calming the disease.
The consultant dermatologist said: “The condition requires regular moisturising throughout the day and medication called retinoids may help to control it.
“The patient’s skin is covered in hard, shiny, thickened plates of skin separated by deep red fissures.
“Patients cannot sweat and regulate fluid loss, which may result in dehydration and heat stroke.”
To donate to Anna’s fundraiser, visit https://www.gofundme.com/h9vrsp-hope-for-anna