A few days ago, we were informed about Radio 4’s fantastic broadcast about Bernat and his illness. Last Saturday, in the same program as Amica i Coneguts, they dedicated their time to our little boy and to Pyruvate Kinase Deficiency, as well as to the importance of donating blood in our country. This time however, […]
Last Saturday, in Nave Ivanow de San Andreu, a concert took place for Aitor. Aitor is a five year old boy that suffers from a rare disease called Duplication of MECP2 Syndrome (for more information about the disease, visit this link). His parents started a series of proposals to raise money to continue researching the […]
This past Wednesday (the 18th), BTV news (Barcelona Television) gave a small report on Bernat and the Blood Bank to highlight the importance of donating blood, as well as to share Bernat’s goal of reaching 1,000 new donations by Christmas. The report informed people about Bernat and his disease of Pyruvate Kinase deficiency, and it […]
This past Saturday, on the radio program Friends and Acquaintances, Bernat and a Pyruvate Kinase Deficit were the protagonists of a fantastic report carried out by Sergi Bassolas. During the ten minute program, the listeners learned about Bernat’s history, his ailment, and the importance of donating blood for those in need. We want to thank […]
“Donors are saving the life of my son, Bernat“: this is the title of an article in “La Vanguardia“, one of the daily newspapers in our country which has dedicated one of its interior pages to our story. On Thursday, Rosa M. Bosch and her photographer, Llibert Teixidó, came to visit at our house for […]
The Race for Hope was held this past Sunday, organized by FEDER (Spanish Federation of Rare Diseases). It’s a spectacular way to pay homage to rare diseases, and raise awareness about the causes and effects of these diseases through sports. The race was divided into three distances: 10 kilometers, 5 kilometers, and a family friendly […]
Apart from chronic transfusions, Bernat should continue periodic checks regarding possible changes that could cause sickness and more transfusions. For example, at the end of July, we mentioned an MRI, but since then, he has needed other check ups done on the heart, the liver, the sight, and the hearing. This is all because of […]
Last week, Barcelona was ready for a party. “La Merce” festival gave life to the city with all kinds of activities and events. Among these events, we attended the 20th anniversary ceremony of the Association of Barcelona in the Plaza Cataluña and surrounding areas. There, all kinds of associations and federations from the social field […]
This Saturday, September 26th, in the Gardens of Palau Robert, the 5th Festival of Hospital Sant Joan de Déu will be held. This year it is called the Festa dels Petits Valents (Festival of the Little Brave People), in order to pay homage to the patients of the hospital. Just like in the past, it […]
On June 11th, Bernat received another blood transfusion in San Joan de Déu Hospital. As explained above, upon arrival he underwent a blood test in order to determine his levels of red blood cells. During this visit with the doctor, we were informed that this time his red blood cell levels were lower than usual. […]