Dominic’s superpower

Statistics say that one in 250,000 people in the world is born with ichthyosiform erythroderma, a skin disease caused by a genetic flaw.

Floriana Scânteie
Povestea lui Dominic
24 August 2020

Statistics say that one in 250,000 people in the world is born with ichthyosiform erythroderma, a skin disease caused by a genetic flaw. Dominic, a 4-year-old boy from a village of Bacau, is one of them. His skin turns red, dries and falls off every day. The boy’s survival depends on a daily care ritual.

Infections and allergies threaten his life everyday

Imagine the most atrocious itching taking over your entire body, turning every day of your life in a nightmare. The face, hands and feet skin dries, cracks and scales off in strips. Lacking treatment, the only comforting option is bathing in a special water that mitigates infection hazards and soothes itching. The second part of the caring ritual involves putting on hydrating lotions. 

“The disease is life-threatening. Infection is one of the highest risks this illness exposes him to. Most children never make it past two years of age if they don’t get daily care and washing, explains Dominic’s mother, affectionately looking at the merry, energetic boy running about the courtyard.

Povestea lui Dominic

A child like any other: curious, sociable, talkative… and red. More so on the face, neck and hands. Most reactions are: “What did you do to him? Did you scald him? Did you keep him too long in the sun? Did you burn him? Sometimes, even the children avoid playing with him “Because he’s got holes in his hands”, relates the mother.  

Cellular renewal in ichthyos takes place every 24 hours, not monthly, as normal, through a visible and uncomfortable process. Dominic’s parents struggle not only with the child’s skin problems, but also with his allergies. The boy may develop bronchial asthma and pulmonary oedema.

“He is highly allergic - we took him to the emergency room. Half his face and his hand were swollen. He simply played with two shell-on walnuts. 

The puny child, insufficiently developed for his age, is on a strict diet: he is not permitted to eat food containing gluten, nuts, mustard or eggs.

Like a butterfly shedding fluff

After an easy pregnancy and natural delivery, the mother was waiting for her baby with excitement.

“Children are reddish when born. He was perhaps a tad redder. One hour later though, his skin started to dry up and became even redder. That is why he was taken to intensive care. On the next day, he was all blooming, like a butterfly shedding his fluff, such was his skin. 

After getting information about this disease, the parents managed to get the paperwork required for accessing the benefits currently available to the disabled. Also, they looked for solutions and joined with other parents in a group, on a social media platform, to share information and support each other.

Povestea lui Dominic

The superpower of being red: daily skin renewal

Come fall, Dominic should go to kindergarten. The kid is thrilled by the thought, whilst the mother is reluctant. Though the disease is not contagious, children and parents steer clear of him.

“I am apprehensive of the children and the words they will say. I am thinking to prepare him mentally, to boost his self-confidence. When he gets older, we will explain to him the implications of his disease. For the time being, I tell him that it is all right to be red. “This is your skin, your superpower’, I tell him. Your superpower is to change your skin everyday – it dries, you shed it off and you get red. You are a superhero! There’s isn’t much more I can tell him at this age”, says Dominic’s mother.

The morning and evening bathing ritual must be strictly observed, even though the boy sometimes grumbles: the mother soaks the child in a tub of warm, whitish water. The nanobubbles machine turns the water in a blessing:

“Before we bought this machine, we fought the bacteria. He had five kinds of bacteria on his body and we couldn’t get rid of them no matter what antibiotic we used. We did all we could to get it and, one week later, we repeated the tests – he was even free of golden staph. Moreover, he doesn’t scratch so much anymore.

With a fine sponge, the woman removes thin, whitish scales accumulated on the child’s face, around his nose, eyelids and mouth. She cleans the scalp with a toothbrush. She pays equal attention to each body part. Then, she anoints him with a fatty ointment, insisting on the reddest, driest and most wrinkled areas. The greasy film forms a protective, hydrolipidic barrier. Should mother fail to scrupulously follow this procedure every day, the boy’s skin would itch unbearably.    

Few understand the calvary that Dominic and his family live through. There is no treatment and, in the past, children with Dominic’s disease only lived for days. Fortunately, though, there are now persons who have been living with this affliction for more than 20 years; however, according to the statistics, most are at risk of depression. All that Dominic’s parents wish is that the boy be not discriminated in the society and that they might continue to afford to provide him the care he needs.

The thought that their child might fall into depression and isolation breaks their hearts. 

You too can help Dominic and other children like him to get better! Every donation matters!

In the UNICEF project “Community Services for Children”, community teams comprising a social worker, a community nurse and a school counsellor provide support and access to much needed medical, social and educational services to children from vulnerable families.

Text now “COPIL” at 8864 free of charge and give 4 euros every month. Give now and help Dominic and other children like him to receive support from local professionals and access services that can improve and change their lives. Thank you!