Penelope Canonico
04/05/2021 17:49
Clarín.com
Society
Updated 04/05/2021 17:49
Insist, persist, resist.
The story of Emma, the 11-month-old Chaco baby who
has SMA
and mobilized the entire country, is intertwined with these values.
“Our little great warrior continues to show us that
the meaning of the word surrender does not exist.
It's all that's right ”, that's how her parents, Natali Torterola and Enzo Gamarra, define her, who fight every day to give her a better quality of life.
Emmita
(as the affection of the people called her) suffers from
spinal muscular atrophy (SMA)
, a genetic neuromuscular disease that causes the muscles of babies to wear out.
It translates into progressively losing the physical strength necessary to crawl, walk, sit, walk, eat and breathe.
According to the National Institute of Neurological Disorders and Stroke, it is an
inherited disorder
derived from a faulty gene that leads to the death of nerve cells.
One in fifty people is a carrier of SMA in the world.
Emmita has type 1. It is the
most serious of all
.
“At 3 months we began to notice that he did not move like babies of that age and that he did not have a head brace.
We consulted the pediatrician, but he told us it could be due to lack of encouragement.
We repeated the visit the following month, and due to the lack of answers we decided to take her to a kinesiologist, who referred her to the neurologist who, finally, reached the diagnosis.
The SMA test came back positive.
By that time, Emma was already 5 months old, ”Natalí tells
Clarín
.
All for Emmy
Driven by her maternal instincts, Natalí explored a range of possibilities.
From Resistencia, they traveled to Buenos Aires and returned from
Garrahan
with a dropper of hope in their hands, the only medicine validated in Argentina: Spinraza (a two-dose vaccine that is given every four months).
"All it
does is that the disease doesn't progress so fast," he
explains.
See this post on Instagram
A publication shared by Todos Con Emmita (@todosconemmita)
At 7 months they got a scare when the baby went into cardiorespiratory arrest.
“We decided to go to Buenos Aires.
In the Güemes sanatorium they put a probe so that he could eat.
They did a tracheostomy ”, details Natalí.
But, in his desperation and restlessness, he did some research on Google and
found other parents with children in the same reality
who were able to access a different treatment with a better result.
They heard about Zolgensma (a therapy, approved by the US FDA for SMA, that replaces the missing or defective SMN1 gene).
It costs $ 2.1 million in the market
.
Two setbacks: the most expensive remedy in the world and its effectiveness requires that it be applied
before two years of life.
“As it is not yet approved by ANMAT in Argentina, I contacted the Swedish Novartis laboratory to ask the crazy question what would happen if I collected the money.
They replied that I could buy it.
Later, I found out that the marketing processes were lacking and that
the process to request it for social work would take nine months,
”he says.
When they discovered that Emma needed this new, highly effective drug before she was two years old to treat herself and get on with her life, they did not hesitate to battle the disease.
On December 7, 2020, they launched a campaign on social networks, which crossed borders, appealing for collective solidarity to raise money through
donations from people, companies and institutions
.
They also opened an Instagram account @todosconemmita to spread the word about the campaign (the website todosconemmita.com shows the means through which it is possible to transfer money).
Countdown
With each passing day, Emma loses possibilities of leading another life.
There are 275 days left to change your story
.
With each donation, hope grows.
The countdown to US $ 2,100,000 continues and they have already raised
$ 920,000, 40% of the total.
Times are pressing.
“We need to infuse Emma as soon as possible so she doesn't lose muscle strength.
I have faith that he will make it
to April 28, his birthday
, with the money raised.
That is our dream ”, the mother confesses, pointing out that she is going through the trunk of memories to find photos of moments that filled the family with happiness.
"It was a day less baby," they whisper to him before sleeping.
Emma smiles all the time.
She has 3 nurses and between a saturation meter, aspirator and a machine that helps her cough, she is surrounded by 5 devices that assist her.
During the day, he looks at pictures, exercises through games and stimuli, and takes a nap.
"All without crying at any time",
highlights his mother
“We treat the baby with kinesiology classes twice a day, we are with a pool teacher, physiotherapist and nurses 24 hours a day;
so that you lose the least amount of muscle mass possible ”, explain Enzo and Natalí.
"We allow ourselves to dream like any father in the world so that the baby can play like all children. Before I wondered why this has to happen to us. Now I wonder why not to us. I think Emma is going to score a before and a later in the SMA problem. We know that there is a long road ahead, but
we are going to walk it with happiness and hope, "
Natalí emphasizes with the need to thank each one of the people who offer her help, be it financial or emotional. Emma has a chance to save herself, she needs everyone's help.
SC
Look also
Susana Giménez joined the solidarity campaign of Santiago Maratea
