Young mum forced to defend parenting after strangers presume her daughter’s rare skin condition is sun burn
A young mum has been forced to defend her parenting skills after strangers presume her daughter’s severe skin condition is sun burn.
Danni Latham, 21, from Walsall, West Mids, was devastated when midwives explained her new-born baby girl, Isla, had no skin on her hands or feet.
Isla was diagnosed at eight weeks old with Epidermolysis bullosa (EB) – a rare skin condition that leaves blisters all over the body.
But since her daughter’s birth in 2014, Danni has found herself being verbally attacked by vicious strangers who believe her skin condition in fact sun burn.
Danni is now sharing her story in a desperate attempt to raise awareness for EB and to increase funds for others with the condition.
The full time mum, said: “I was heartbroken when my baby was born with no skin on her hands or feet but her skin went from bad to worse.
“Just hours after she was born her body was turning into one big blister.
“She was given just weeks to live and no one knew what was wrong with my baby.
“Doctors warned she was missing a layer from her skin that protects it, causing any movement to blister the skin from head to toe.
“I cried and begged them to help her, but I soon found out there are three types of EB, the mild type affects the skin, with the worst killing children as the blisters grow into their heart and the suffer a horrific death .
“Isla was finally allowed home after six days, I discharged her myself as I was fed up of no one knowing anything about her condition – she was diagnosed with EB Simplex, a milder form of the condition, eight weeks later.
“Ever since then we have been battling every parent’s worst nightmare, baffled doctors, no cure, no treatment and cruel taunts from disapproving strangers.
“People have stopped me in the street and asked ‘what have you done to her? Has she not worn suncream? She looks burnt?’ it’s so hurtful.
“But I am determined to give my daughter the best possible future so I have started fundraising for Irvine McLean and his lab of human sciences.
“Despite being in daily pain, Isla loves nothing more than playing with her toys, wearing fancy dress and having her friends over.”
Danni, who had never heard of EB before her daughter’s diagnosis, now lances, cleans, creams and dresses Isla’s blisters every morning and night to avoid infections.
She added: “When I was told there was no cure for my daughter’s skin condition, I was beyond devastated.
“Children with the condition are also known as ‘butterfly children’ as they too as very delicate to touch.
“Isla is currently having tests to determine why she has Epidermolysis bullosa, but we know it’s genetic .
“I have travelled across the UK to seek private health care and visit leading specialists but in order for Isla to lead a normal life there needs to be a breakthrough in treatment for research EB.
“That’s why I have set up my fundraising page as I want to help Irvine McLean and his lab in Scotland to try and find my girl and all the other innocent children something that may just help the day to day pain and nightmare of this condition that effects 1 in every 800 thousand people.
Danni has been through a nightmare two years with Isla but is determined not to allow the condition and strangers taunts ruin their future.
She added: “I will always do my best by Isla and although me and my family have had a tough few years, I won’t allow it to get us down.
“I once had a massive panic attack in the Bullring and from then on I spent a lot of time in the house with Isla as I was scared of anyone touching her or making her even worse.
“For months I asked myself ‘why us’ but then when I realised what an amazing inspirational child I have and it all changed, I became focused and regimental with her routine.
“I am very OCD when it comes to Isla, some nights I wake up in the night to pop blisters while she is asleep.
“I am already worried about her starting school in two years’ time but I’m confident she’ll make friends and be able to explain her skin condition to those around her.”
To support Danni and read more visit: https://www.gofundme.com/2hskvks
Do you, or someone you know, have a similar story to tell? Get in touch today to earn £££ and raise awareness.