Pilgrim Enrique 'Kike' Ramos and his two children, Lola, 10, and Yago, 4, arrived in Santiago de Compostela this Tuesday after traveling 800 kilometers of the Camino in 30 days to raise awareness and raise funds for the Spinal Muscular Atrophy Foundation ( Fundame), illness suffered by his niece.
The pilgrim and his family have developed the initiative 'Two (3) Ramos en el Camino' with which they seek to collect donations through platforms and social networks.
"We were doing the Camino de Santiago in 2018 with my daughter, when our niece was detected with the disease. That is why we thought it was a good reason and a good driving force to be able to use our route as a way of making this disease visible," Ramos detailed.
Kike has made the Camino from Euskadi pushing the chair where little Yago, 4 years old, was traveling. Accompanying the steps of his father, 10-year-old Lola, he made the tour by bicycle, but with the difficulty of doing it outside the circuit designed for this.
"We have created a project for collaborations and donations within the Kukumiku website that could be done with various digital money sending format systems, and a donation certificate is issued in it," the pilgrim detailed.
After 30 days on the road, going through 30 stages and covering almost 800 kilometers on foot, without receiving assistance in moving belongings, Ramos explained that it was in "tribute to the mothers and families that the aid they receive is minimal for the treatment of SMA".
"When they tell us that we are brave for doing this with my children, I answer that we have not done anything. It is the families who spend their whole lives pushing the chairs," Ramos expressed with the emotion of the case.
To obtain more information on how to make donations and follow the story of this campaign, Kike Ramos has invited you to follow him on the Social Networks where the publications are made. On Instagram, @dosramos_enelcamino.
As Kike Ramos explains, there is currently no cure for spinal muscular atrophy. But there are palliative treatments that "stop the disease" and help its evolution.
In the context of the state elections that were held last month, Fundame has launched the 'General Life Elections' campaign that demands a protocol that guarantees equal access to SMA treatments throughout Spain. "When the protocol was generated in 2018 for the administration of this treatment, which was no longer experimental, a door was left open. When a patient with SMA undergoes some analysis and goes beyond certain parameters, the treatment is interrupted. This means that the patient is sentenced to death," Ramos denounced.
For this reason, when treatment is interrupted, with the current protocol, neither the doctor in charge nor the will of the patient have weight in the decision to continue or suspend it.
The Foundation is directed by a cooperation of relatives of those affected by spinal muscular atrophy. The objective is to finance the investigations that arise around this disease.
It seeks to meet the objectives for "a better future for all people with SMA and their families", a disease that affects 2 out of every 10,000 births in Spain.
To collaborate in this initiative, you can donate through a crowdfunding platform that will allocate all the money raised to the Spinal Muscular Atrophy Foundation.
