Jairo Gallardo, a three-year-old boy from Malaga, was diagnosed two years ago with Type 2 spinal muscular atrophy (SMA) which means he cannot speak, walk, breathe or eat normally.
At present there is no cure for this neurodegenerative disease, but there is a type of medication which slows down the progression of the symptoms and improves patients' lives.
The drug is called Spinraza and in an attempt to obtain it for Jairo his paternal grandfather, Domingo Gallardo, started a petition on the digital platform Change.org.
It received over 140,000 signatures in a short time, and seems to have been effective: the Andalusian health service has indicated that it would be prepared to give Jairo the medication once a committee of experts has assessed his case, and will authorise this once it has received an official request from his neuropaediatrician.
Jairo's family are feeling more optimistic now, after receiving a phone call from Josefa Ruiz, the general secretary of Public Health and Consumer Affairs at the Junta de Andalucía.
“She said they should be able to start giving my grandson the medication in two or three weeks' time,” said Domingo, who is 59 and retired.
Jairo, who was born at the Clínico Universitario Hospital in Malaga, needs the medication to fight his condition, which restricts his movement (he has lost a great deal of strength), and makes it difficult for him to eat, drink and breathe normally. It has also curved his back.
“We know that the treatment isn't a cure, but it slows down the symptoms and seems to be very effective,” said Domingo, who is grateful for the response to his petition on the internet calling for Spinraza to be made available for all children in Andalucía who need it.
“I never expected so many people to sign the petition in just over two weeks.
I want to say thank you to everyone who has supported this campaign,” he said.
He started the petition after his emails to the Junta de Andalucía and the ombudsman failed to elicit a concrete response.
Domingo also stressed that he will continue to campaign until the Junta de Andalucía has kept its promise.
Spinal muscular atrophy is one of several hereditary illnesses which progressively destroy the lower motor neurons (nerve cells in the brain stem and the spinal cord which control the voluntary muscular activity essential in speaking, walking, breathing and swallowing.)
Analysis of each case
The regional government's health ministry says that the medication requested by Jairo's family is authorised for compassionate use by the Spanish Medications Agency (AEMPS), which is part of the Ministry of Health.
“Those are the conditions for use in Andalucía: each case has to be analysed separately and, where applicable, authorisation is then given for special medications or those of compassionate use,” the ministry said in a note.
It added that so far in Andalucía six patients with spinal muscular atrophy have been authorised to receive this drug.
The ministry stressed that the decision, in all those cases, was taken by a committee of experts, who evaluate the situation if a neuropaediatrician who is looking after a sick child believes they would benefit from this medication.