The mother of a 4-year-old girl says she is ‘devastated’ by the nastiness her daughter has faced from others due to her lifelong skin condition.
Kamila Formela is the mother of Lena, a young Isle of Wight girl who suffers from mastocytosis – a skin condition that leaves her skin coated in blisters and sores, which not only cause significant physical discomfort, but also emotional trauma thanks to the unkind behaviour of others.
Lena, who is due to start primary school in September, has received diabolical comments directed at her, with her mother, Kamila, being openly asked by members of the public ‘what is wrong’ with her daughter.
Mastocytosis is a condition which Lena will have for the rest of her life, and is caused by her body creating too much histamine. The results can be both physically and mentally distressing.
Lena’s journey started just weeks after she was born when her parents began to notice small red spots appearing over her body. Initially believing that she was suffering from a milk allergy, she was taken to a doctor.
Her mother, Kamila, tells the story:
“When Lena was about 3 months old, we started to notice these red spots appearing across her body. They soon turned to blisters and started leaking blood and liquid.
“I was having to change her bedding every single night as by the morning it would end up covered in blood.
Article continues below this advertisement “We took Lena to the doctors, who were initially unhelpful. I was persistent, until a doctor told me that there ‘were other children with bigger problems’.”
Eventually, as the problems persisted, Lena was issued with an urgent referral to Southampton General Hospital, where her family were told that the sores could be a symptom of some sort of childhood cancer. Later, a dermatologist named Professor Godfrey was able to put Lena’s parent’s minds at ease when he diagnosed the now 5-month old with mastocytosis.
The painful journey wasn’t over for Lena and Kamila at that point though, as despite managing to control the condition as much as possible, they weren’t able to control the thoughts and words of others.
Kamila continues:
“We managed to begin to control her skin as much as we could, although, there is only so much anyone can do with this condition. It’s lifelong, and whilst the spots may fade as she ages, they will always be present.
“One of the main problems we face now, and have faced for several years, is other people. They treat her like she is contagious and say unknind things about her and about us [her parents].”
Comments on Lena’s appearance haven’t just come from the children in the playground though. Her mum says that even adults have said disrespectful or humiliating things within the 4-year-old’s earshot.
Kamila says:
“We’ve had people behind the counter in shops outright ask what she’s done to her face. We’ve had people telling their kids to stay away and not play with Lena because they might catch ‘whatever she’s got on her face’, we’ve even had people accuse us of hitting and injuring her because of how the spots can appear like bruises.
“We can’t seem to go to the shops without someone staring or commenting. It’s been… it is horrific.”
Kamila is hoping to raise awareness of Lena’s rare condition in the hopes that rather than judging her and making rude comments, people will support her and others with the same and similar ailments.
A keen cyclist and fishing fanatic – and known to almost all the regular fishermen at Ryde Pier – Lena is now becoming aware of her own condition as she gets older and has begun to ask her mum why people point and make comments. Her mum says she hopes that by bringing awareness to her condition, others will be able to support her as she learns to live with it.
Kamila finished her story by saying:
“Lena is always described as such a lovely girl – in fact someone described her as the loveliest girl they know. She’s so lovely, and charming, and precious. I just wish people could see past her condition and treat her as the sweet 4-year-old that she is.
“She always says hello to people, she’ll go up to them and just say ‘Hello, I’m Lena’. She’s so polite.
“She is just a girl, like all the others, and people shouldn’t judge her or make her feel worthless because of some spots on her skin.”
If you’d like to find out more about mastocytosis, you can read more about it on the NHS website. You can find support and guidance from The UK Mastocytosis Support Group.
The doctors unhelpful no way. I wish this girl the best for the future and if people don’t have anything nice to say then don’t talk at all.
Brave little girl…. Words can be so damaging, well done to mum for telling her story :o)
Poor little thing should be recognised as unique but others will pick on her without understanding the issue.
there is hope apparently – 60% of kids with this, do not always take it through to adult hood -assuming i have read the MCAS site correctly – so fingers crossed for her.
one harsh comment from someone as she grows through formative years and her confidence will be shattered – she won’t want to go out etc etc – her mum must be worried about this.
it will be hard enough at school without so called adults saying things.