Amelia bathes in water with a few drops of bleach, and must follow a thorough daily routine of hydration and care. He is only one year old, but since he was born he has been fighting a rare dermatological disease called laminar ichthyosis, whose etymological meaning is "fish skin".
Laminar ichthyosis is a pathology of genetic origin which was diagnosed to Amelia after days of suffering and uncertainty. Now, her parents only hope to raise enough funds so that her little girl can have a better quality of life.
He was born with thick and shiny skin
Amelia was born a year ago in a hospital in Wisconsin (United States), four weeks before the due date. As soon as the doctors saw her they knew something was wrong, but in those first moments they were unable to determine what.
The girl He was born with a thick layer of skin all over his body, and his face was tight and bright. He could not close his mouth or eyes and the skin of the joints was bleeding continuously, so nurses had to apply creams and petroleum jelly every two hours.
"When he was born, he looked like a small plastic doll. He had really thick, tight and shiny skin. He couldn't close his mouth or eyes, and his fingerprints were not visible" - recalls his mother in statements collected by the newspaper Subway.
The doctors were baffled and decided to keep Amelia hospitalized until she knew what was wrong. The diagnosis came days later from the University of Minnesota: I had laminar ichthyosis.
Your daily care routines
The main problem Amelia has, and that her parents should avoid, is that your scaled skin becomes infected, so doctors have recommended baths with a few drops of bleach, since the little girl does not tolerate any soap.
But the bathroom is only a small part of the care you need to keep your skin in the best possible conditions.
Needs to frequent hydration throughout the body to prevent clothing damage, and special attention to the scalp and nails, which are especially affected by this condition.
As the layers of skin accumulate, the shedding cycle begins that usually takes several days in the torso area, one week on the face and more than two weeks on the scalp, which causes your hair is especially thin and brittle.
In addition, the child must follow other care such as taking fluoride supplements To avoid dental abnormalities, the use of eye medications for the seasons when you cannot close your eyes, and special attention in times of heat, since your skin does not allow you to sweat or regulate your body temperature.
His parents explain that at this time they have received all kinds of unfortunate comments from people who believe that Amelia's condition is due to a neglect of her parents for exposing her to the sun without protection."When people make these comments, or I ignore them or try to educate them by explaining what laminar ichthyosis is"
"When you deal with someone unknown, you don't know why he is doing things as he does, or the reason for his decisions. We all have our reasons to act in one way or another, so we must not assume that what other parents are doing with their children is the result of poor parenting"- express their parents.
With the savings spent on the various treatments that her daughter has required in this first year of life, the family has started a campaign in Go Found Me to raise funds. At this time his goal is to buy a special machine that would avoid baths with bleach, increase the hydration of your skin and help you sleep better at night, reducing itching and burning.
Laminar ichthyosis, a rare disease
Our skin undergoes a continuous process of replacement that occurs when cells mature and peel. This desquamation is microscopic - and therefore invisible - and organized. But sometimes, due to alterations caused by different reasons, this peeling does not occur in the same way.
Laminar ichthyosis is a rare and congenital disease, which manifests itself from birth and lasts a lifetime. It affects 1 in 300,000 newborns, which are usually born wrapped in a collodion membrane that detaches between 10-14 days later.
Over time, the skin accumulates large red scales whose appearance simulates the skin of the fish, also affecting the nails and scalp, and sometimes causing scarring alopecia.
This condition can also alter the normal function of sweat glands and produce a decrease in sweating, which in extreme cases could cause severe heat intolerance and sometimes overheating.
In more severe cases, the eyelids can also be affected, not closing completely during sleep, so it is necessary to hydrate the eyes with artificial tears and ophthalmic lubricants that help prevent the formation of corneal ulcers.
In Spain there are 300 people affected by laminar ichthyosis, and although given its low prevalence this disease is classified as "rare", it is important to give visibility and dissemination, because the families and children who suffer from it need the support and understanding of allGoFoundMe Photos
Via Metro
In Babies and More Rare is the disease, not the child: World Rare Disease Day 2018, Knowing how your baby's skin evolves will allow you to take care of it at all times
