Girl with rare fast-growing skin condition needs 2,100 calories a day

Four-year-old Anna Riley suffers from harlequin ichthyosis – a rare condition that causes skin to grow incredibly quickly.

As skin is the largest organ, the condition affects nearly every aspect of a sufferer’s life.

People with harlequin ichthyosis cannot sweat and live with a high risk of infection. The extra skin must also be taken off daily, in order to maintain overall health.

Little Anna, from New York, needs a three-hour bath every morning and her mum, Jennie, has to apply Aquaphor (a healing ointment) every few hours.

Because of the extra skin Anna produces, she has to eat 2,100 calories a day – more than an adult woman’s daily recommendation.

Her mum Jennie says: ‘Anna has just started preschool this year, and she is settling in well.

‘She doesn’t go in until 10 o’clock because of everything that we have to do in the morning.

‘But there is a nurse in school so if she gets uncomfortable she can have lotion applied, and she also has a full-time aid to help her with anything she needs.

‘People have been incredibly accepting of Anna and her skin condition, she has a lot of friends in school.’

Anna has lived with the condition since birth but, due to medical advancements, has experienced a relatively normal childhood.

However, the four-year-old still doesn’t fully understand it herself.

Jennie adds: ‘Right now she is not at an age where she has asked us questions about what her condition means.

‘She knows that her skin is pink and she loves that her whole body is pink as it’s her favourite colour.

‘I don’t know if she understands fully the physical effects quite yet, but she’s very confident about her skin.

‘She gets some odd looks from other children at the park sometimes, but she hasn’t noticed that yet.

‘I have had to explain her condition to other parents, I usually try to break the ice with people and explain it’s a medical condition.

‘Even in real life people have been very accepting of her, she’s a happy, jolly kid and you see very easily that her skin is all that’s different about her.’

Jennie has also taken to social media to share her daughter’s story, in the hope that it will raise awareness.

Now the youngster has 130,000 followers on Instagram and almost a million followers on TikTok.

Jennie says:  ‘People have a lot of questions about harlequin ichthyosis but I believe it’s a good thing for them to see Anna adapt to a regular life with the condition.

‘She’s raising a lot of awareness and breaking social norms for those visibly different.

‘She’s making it normal because once you get to know her she’s just a regular kid, it’s just her skin that looks different.’

Jennie adds that Anna’s story is also driving awareness for people living with harlequin ichthyosis in developing countries – and she’s started a foundation to help others in need.

‘There are a lot of people that comment or contact me that they would love to offer support when they see Anna’s journey,’ the mum continues.

‘But we don’t really need anything, we have everything we need but there’s a lot of people that don’t.

‘Especially when you consider medical insurance and over the counter lotions, Anna uses two tubs of Aquaphor every week.

‘It can be very expensive and there are a lot of people that don’t have that kind of ability to get everything that they need.

‘We have a foundation that raises money to buy supplies for people that have ichthyosis in other countries.

‘We buy cooling vests and bathtubs and things like that that people need, that has been the most amazing thing throughout this journey.’

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