Three rare diseases and five children “enlightened” by love

And, unsuspecting Dailianis, Adriel, Jonathan and Joshua Abram and brothers, inspired from his “special” health condition greater commitment, kindness and dedication of those around you both in the home and in the hospital.

Through a brief look at their realities a team press so was found.

THE OPPORTUNITY TO LIVE

In the province of Granma, over the past 10 years, more than six children three victims were diagnosed rare diseases: arthrogryposis, Morquio’s disease syndrome Werdning Hoffman, all severe pathologies that generate dependency of small to artificial ventilation, limiting their physical-motor and social development.

Precisely because they are atypical and irreversible, these conditions, classified as rare, do not receive prolonging track in many countries, so patients usually die quickly.

“In Cuba, however, the policy is to keep the patient alive with dignity until your body allows. Ie when diagnosed children these diseases is decided put an artificial ventilation and specialized care, “says Registered Nurse Yanelis Lopez, First Degree specialist in Intensive Care and Emergency pediatric hospital Luis A. Milan, Bayamo “.

“Although getting a computer for prolonged ventilation, which can be continuous or intervalos-, whose origin is German, is costing the country 29 000 926 60 Cuban pesos -more than a thousand CUC- is assigned to the child for free “adds also Teaching Care Unit Pediatric Intensive Care Granma, who pointed out that in a Cuban medical center the daily cost of a patient under this health condition amounts to 100 CUC.

to guarantee such ventilation at home: This government efforts to provide medical equipment to each of the infants in Cuba  requires an even more commendable it will be added.

“Studies show that having at home the child, despite his health condition, reduce morbidity, fewer complications, and interaction with the environment and the convenience of being family influence better acceptance by the patient. “

“This requires a cross-sectoral working between primary care (doctors’ offices) and secondary health (hospitals), which involved pediatric specialists, nurses in the areas of health, psychologists and therapists, with the aim of it is coordinated enable small and small Expect preconditions, “adds Lopez.

EXPERIENCES FROM HOME

With very expressive eyes Dailianis Gamboa we get at home. – “I love the room, because from here you can see people when going down the street,” – tells us his mother Dailis Zambrano, who tells us in one go, so that the bad times pass shooting in the story, how they discovered the disease received little attention until just turned nine.

“The girl was born with no apparent condition, but spent his first month of life dad and I realized that there was no movement and that something was wrong, hence decided to go to the doctor and then the five months we went to Havana and beyond genetic studies we detected a SMA type I, also known as Werdning Hoffman disease. “

Since then Dailianis requires artificial ventilation permanently. “He was admitted to the children’s hospital for two years, three months and 16 days until he was given this team of home ventilation,” said Dailis, who has continued to find support in the middle of the complex health condition of her child.

“My husband (father of Dailianis) and I lived in the community Cheese, which is 22 km from the town of Guise, and as it was so difficult to transfer to the hospital the provincial government gave us this house in the industrial area of Bayamo. So I say thanks to the Revolution my daughter is alive, because all this service, both the ventilation equipment and medical supplies the give me free, and I know they are expensive.

“We also received support from a nurse who is responsible for medical care for the child, and also have assigned a pension equivalent to the salary that she earned while working as a professor of computer science, including retirement,” says Dailis between emotional pauses spread and stir.

Dailianis but cannot recite the poem Los zapaticos de rosa, also has with its Ada teacher who reads stories and teaches through his heavy eyebrows and lively pupils sign language that allows better communication and links with the family.

Not far from Dailianis “child” Adriel lead after 17 lives. Adriel have an MPS or Morquio disease, often within rare diseases, according to statistics for the prevalence of this disease is one hundred thousand or two hundred thousand births.

This condition, although it does not totally dependent on artificial ventilation has not been allowed to develop their muscles and limbs, and cope alone.

His mother Maria Gonzalez said that the disease does not appear until three years when stopped walking and respiratory failure later lead him to the intensive care unit. “He was admitted three years, a time when he was treated very well in the hospital and then assigned the ventilation equipment for the home, which got here because we were Bayamo Rio Cauto,” Maria explains.

Adriel, who like Dailianis has access to a telephone and a heated room similar to the hospital conditions, together with his team of artificial ventilation, do not leave us from your home without letting us know in whispers who likes the ball , watch TV, and that nurses has found good friends.

COMPLICIDAD WITHOUT WORDS

Clothed not only with the maternal and filial love of their loved ones but also with the medical team, living in the children’s hospital in Bayamo, little Jonathan, a year old and brothers Joshua and Abram, three-year eight months of life respectively.

Jonathan suffers from Hoffman Werdning while Joshua and Abram suffer from arthrogryposis multiplex congenita, the third of the diseases described as rare.

“In this room nurses are love. Upon receiving the news of the child’s illness it was very hard because even though doctors told me that there was this possibility as a mother I always hoped it was not, and yet all the time I have felt supported and now that I’m pregnant attention has been exceptional, “says Arlet Cedeno, Jonathan’s mother, who requires constant ventilation and is waiting for his team at home.

“These little children have specific characteristics which therefore require special attention. We care, we bathe them, feed them, the aim … are like our children, “said Aliuska Carvajal, room nurse (called extent of child therapy), she carefully prepares Jonathan.

“Here we work with love with these babies, because unlike the other children they cannot say mom, I have famine, and mourn before the pain, so they are deserving of all the dedication of the world, and in the end thanks . I particularly want to say to us even though we cannot prove it in a gesture, but sometimes looks not mean everything.

“The time is always very difficult to separate because they are already part of our family and when we will unfortunately one we are very sorry indeed. But we share the same difficult things as a complication of their disease also have the ability to share special moments like birthdays, days when more assets are placed, it is perceived as the joy. In addition to their homes when they maintain the link and clothe “he emphasizes Carvajal.

RARE DISEASES

Morquio syndrome is a metabolic disease in which the body is missing or does not have enough to properly break down long chains of sugar molecules.

Meanwhile, arthrogryposis multiplex congenita is a clinical syndrome that occurs infrequently, affecting one in three thousand births. It is characterized by the existence of congenital contractures affecting several joints of the body, especially the limbs and sometimes associated with abnormalities of other organs such as heart, lung and kidney.

Meanwhile, Hoffman Werning is a type of spinal muscular atrophy. This disease ranks second among the regional recession, which means that it is hereditary.

These are not the only rare pathologies, but in Granma were the most frequent. Unfortunately Dailianis, Jonathan Adriel Joshua and Abram must live with them, but-fortunately – do enlightened by the love and dedication of those who watch day after day, morning after morning and dawn after dawn each of his breaths.

Translated by: Daysi Olano Fernandez

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