The desperate parents of a baby with an aggressive disease that is slowly killing him are hoping for a Christmas miracle to get the GBP 1.6 million (around R32m!) he needs to survive.
Rafael Calderon Benavente was born on 21 October 2020. Just 15 days later, he was diagnosed with the rare genetic disorder called Spinal Muscular Atrophy (SMA), a neuromuscular disorder that affects one in 10,000 babies of the world.
Felipe Calderon, his father, explained in an interview with Real Press that this disease “is a rare genetic condition. The body is not producing the proteins in charge of protecting the neuromotor cells. Due to the fact that the body doesn’t have this protein, the cells are dying. In the case of Rafael, it is happening very fast because it is the most aggressive type of this disease.”
Symptoms include the loss of muscular tone and movement control in the legs and then it spreads throughout the rest of the body. Eventually, the natural cause of death is due to suffocation as the body does not have enough strength to breathe or swallow.
Mom says her ‘world collapsed’ when baby was diagnosed
Madeleine Benavente, the mum of the baby, who was born in Talcahuano, near the city of Concepcion, in the central Chilean region of Biobio, admitted that when they were told about the disease affecting their first son, “the world collapsed, but we acted very fast in order to know the ways to follow to find a treatment very fast.”
The new family had to move to Santiago de Chile so that Rafael, as he is called, could be treated by the best specialist and they found that there is a unique treatment for the disease, but it costs GBP 1.6 million (around R32m).
World’s most expensive medicine
The treatment is called Zolgensma and it is considered the most expensive medicine in the world, but it is the only cure for Rafael. According to doctors, once administered, it stops the disease in its tracks.
“The medicine is not covered by the Health Care of Chile, neither by private health insurance companies”, the father commented.
“It is the only cure in the world, it repairs the DNA and repairs the genetic failure, making the body start producing the proteins needed to protect the neuromotor cells.”
“As soon as it is given, the better, because the neuromotor cells that have already died will not come back to life again, but it avoids that more will be destroyed”, he added.
Other treatments delay death, but aren’t a cure
Rafael’s disease has other palliative treatments, but they do not cure the disease, they only delay his death.
His parents have started a campaign to collect money, which is called “Salvemos a Rafael” (‘Let’s save Rafael’) on social networks and so far they have managed to collect around GBP 668,261 (around R13 350 000), but it is still not enough.
Celebs have stepped in to help
Their story has made headlines in Latin America and a lot of celebrities have joined their cause, asking their followers to donate money.
Meanwhile, the couple are living with relatives in Santiago de Chile and due to the coronavirus pandemic, the protocols in the hospital where Rafael is being treated are very strong, so that they are not allowed to be with him all the time.
“Our daily routine is very tense, we two are only allowed to be with him once per day in the intensive care unit of the hospital but I am with him in the clinic to give him the milk from the mum that is frozen”, his father commented.
“When we can be together, we can hold him, very carefully as he is connected to a lot of machines, and we participate in his therapies”, he added.
Nurses pamper the little one
“He is cute, he is a very big baby, he was born in the 41st week of pregnancy, weighing 4.56 kilogrammes and measuring 55 centimetres”, his mum said.
“He is very sweet, but also very serious, he is also observant and wrinkles a lot his eyebrows, and that makes him very sweet and adorable”.
“However, he does not give us a lot of smiles”, Rafael’s mum Madeleine said.
“All the nurses pamper him a lot, because he has a serious character, but when he sleeps, we can see him smile, and we wonder what he is dreaming about”, the father said .
Parents still hopeful of finding a solution
They still have hope of finding a solution, despite it being a “difficult odyssey”, which “sounds unattainable, especially in a country where family incomes are around 371 GBP (around R7,400) per month, gathering this amount with the urgency we need is difficult, every day, a part of our child is dying”, Rafael’s dad Felipe said.
“I think we can get it as there are a lot of good people all around, we do believe in the good of people”, he added.
Donations can be made here: https://salvemosarafita.cl/