Carlos Guajardo placeholder image
08/22/2021 6:00 AM
Clarín.com
Society
Updated 08/22/2021 6:00 AM
Just 6 years.
And Luz Selena already knows what operations, intensive therapy and platelet transfusions are.
Is that he was born with one of those "rare diseases" that occur in one out of every 100,000 births:
ART syndrome
.
That is, the bilateral absence of the radius.
In addition to the low platelets, which resembles leukemia, although without cancer cells.
Selena
doesn't dominate her little hands
. It is as if they were made of paper. They grow inward and have no way to support themselves. “
We have to operate it now.
We are running out of time. This disease is progressive. As she grows older, her muscles atrophy more and her hands remain in the position with which they were born ”,
Ivana Lobato, Selena's mother
, tells
Clarín
from Caleta Olivia, in the north of Santa Cruz where she lives. family.
And he continues: “The only solution we can find is
an operation that is carried out in Spain and
costs
30 thousand euros
, plus the expenses that we would have for the stay.
It is a very high figure but it does not intimidate us.
We started doing all kinds of things to raise funds.
In Spain they would do
a transplant of the second toe to the little hands
, which would solve the problem for life ”.
Selena and her parents in Caleta Olivia, waiting to travel to Spain.
Photo: Aguilera Family
Ivana has a women's beauty practice and Ezequiel Aguilera, the father, sells kitchen products on his own.
He was recently unemployed due to the closure of a well-known home appliance store.
The family is completed by Tiziano, 9 years old.
“Her older brother accompanies Selena everywhere.
It even
reassures her when she has to go into the operating room
"
, they are proud.
At six years old, Selena's medical history is impressive:
13 operations on her arms
, 300 blood draws, 70 hospitalizations in intensive care and more than 100 platelet transfusions.
TAR Syndrome (Radial Aplasia Thrombocytopenia)
makes it difficult to move her hands
, which makes Selena unable to hold them and unable to perform simple things like lifting her leggings or cleaning herself.
And since his wrist is not well developed, he can turn his hands completely back and forth.
Doctors call it “zamba hands”.
To clap, you must keep one hand still and strike with the other.
Selena fights a rare disease that occurs in one in every 100,000 births.
Photo: Aguilera Family
“During the baby's first year, we went from Caleta Olivia to the Italian hospital in Bahía Blanca and Garrahan in Buenos Aires.
We had no alternative.
Selena was born with this malformation.
During my pregnancy we never knew what I had because it was not seen in the ultrasounds, "says Ivana.
"It was when she was born that we realized that she was missing the radius bone in both arms," she adds. "And after a few days other things began to happen to her. We couldn't touch her much because
her body
was
immediately marked
. It was all very confusing. for us until we found out that he suffered from this disease. "
The baby
went through numerous specialists
in search of a method that could give the little girl a normal life.
The last alternative required a year of treatment that did not ensure a total solution and it would be a time when he could not do anything.
Neither go to school, nor handle their hands.
“Until
we found a woman whose daughter had the same problem
.
He lives in Spain and a few months ago he told me that he had found a place where they did that surgery and there we started with all this, which is great hope for everyone.
Especially for Luz Selena ”, explains the mother.
Her little brother Tiziano accompanies Selena everywhere.
Photo: Aguilera Family
“In surgery, the second toe is completely removed and transplanted as if it were a radius.
This surgery
is done for the only time in life
and the transplant is completed so that it continues to grow with it, ”Ivana says.
From this complex intervention, Selena
could begin to make her life with less complications
.
“He is 6 years old and it is very difficult for him to pull down his pants, pull them up every time he goes to the bathroom.
You must have someone to assist you.
They are very complex things that we know that as time goes by they get more complicated ”, says the mother.
Today the hope of her entire family and of the little girl herself are placed in Spain.
The family
recently
made a profit and raised about 350 euros
.
“People were very helpful.
And we also received many messages of encouragement, ”the Aguileras maintain.
With this first collection they could pay for the first medical consultation.
"I don't want my hands to be bent forever,"
Selena tells her mom.
“I explain to him that if we manage to go to Spain and the operation is going to be missing a toe on each foot.
And he answers me with great maturity: 'Who is counting your toes.
I'm not going to go through life counting fingers, Mom. '
And my soul breaks, ”says Ivana.
The family struggle will continue.
And the Light Selena, who is
now stronger heart and maybe tomorrow have the same strength in his hands.
Chubut. Correspondent.
Look also
Video: he is 4 years old, the radius is missing in both arms and his family is fighting for it to be treated in the United States
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