Amb motiu del naixement de la petita Bianca, la germaneta del Bernat, La Vanguardia va fer un article sobre tot el procés. Com sempre, ens va acompanyar la periodista Rosa Maria Bosch, una gran professional que sap la nostra història des del principi. Després d’anys lluitant, Bianca ja ha...
Sempre diem que és molt important donar sang, i que realment amb aquest acte es salven vides. Però la vostra sang, té un grup sanguini que no és compatible amb tothom, i això s’ha de tenir en compte a l’hora de fer una transfusió sanguínia....
Aquest Nadal passat, a l’Escola Bressol Pegaso situada al districte de Sant Andreu, es va organitzar un sorteig de paneres solidàries amb en Bernat com a protagonista. La finalitat era recollir diners per fer una donació a l’Institut Carreras, i destinar-ho a la investigació...
Aquest dissabte 26 de Novembre, la Sagrera gaudirà d’una jornada solidaria dedicada a en Bernat i la donació de sang. Tots vosaltres esteu convidats! Aprofitant les festes de la Sagrera, a la plaça de l’Assemblea de Catalunya, es realitzarà un matí solidari amb moltes...
El darrer 26 d’Octubre, amb motiu del pròxim #GivingTuesday, en Bernat va ser notícia a La Vanguardia (edició impresa i digital). L’article, Transfusions des del bressol, escrit per Rosa Maria Bosch, explica breument l’evolució de Bernat en aquest últim any. A més, també comentem com...
It’s been a long time since we’ve published anything on our blog. But today we had to! We needed to share our joy with all of you! We’ve been added to the website Enerca, the European Network for Rare and Congenital Anemias. Enerca is...
Thanks to the creation of this website, elPetitBernat.com, we have been able to disseminate clear and comprehensive information about Bernat’s illness. It’s clear that Bernat is the protagonist of our page, but we have also been able to use the site to inform many...
Recently, elpetitbernat has been made available in English. This means that all of the information about Pyruvate Kinase Deficiency and about little Bernat is available to many more people on the planet. But don’t think we did this ourselves! It was a marvelous act...
Last Thursday, February 4th, while Bernat was receiving his transfusion, we had a lovely visit from somebody special. It was Salvador Tejero, one of the most senior and beloved volunteers at the Sant Joan de Déu Hospital. It had been several months since we...
This morning was the kickoff of the Blood Donors’ Marathon 2.0, where the opening ceremony in the Plaza Catalonia had a marvelous atmosphere. There, we were fortunate enough to meet some authentic heroes who have donated and received blood. There were several buses and...
The 2016 Blood Donation Marathon began today, which addressed the importance of donating blood. Yesterday we had the privilege of being guests on the famous Catalonian television program, Els Matins. The interview, hosted by Núria Solé and Cristina Macías, lasted about 20 minutes. Together...
Lately, we have not discussed the blood transfusions that Bernat has been receiving in our blog. Although there have been many ups and downs, some weeks are more difficult than others. But at this time, we have decided to announce something: one of the...
Bernat is one of the ambassadors of the 2016 Catalonia Blood Donors Marathon 2.0. For this reason, Bernat has participated in the emotional campaign “The Fate of Donating Blood” (the featured video) made by our friends at the Blood and Tissue Bank of Catalonia.
On the day of the Blood Donors Marathon 2.0, media organizations such as Television of Catalonia (TV3) and Barcelona Television (BTV), mentioned the marathon on their programs. And for good reason, Bernat was one of the youngest guests there.
On December 28th, 2015, in Barcelona, the Catalan Blood Donor Marathon 2.0 was announced, and it was held January 15-22 of 2016. Ada Colau (The Mayor of Barcelona), Gemma Tarafa (The Commissioner of Health), and Enric Argelagués (The Director of the Blood and Tissue...
On November 29th, blood donors will be featured in The Point Today with the motto #GivingTuesday. The article will describe how donors can help people in need through blood drives. The blood drive hopes to reach one thousand donors. Like other occasions, Bernat is...
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...
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...
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...
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...
“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...
On October 24th, we celebrated the second Red Day, a day dedicated to the families that donate blood, and created for the Association of Blood Donors of the Saint Pau Hospital. The main objective of this fantastic event is for children to see the...
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...
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...
Last Tuesday the 29th Bernat received another blood transfusion. Even as his parents it’s hard to know exactly how he is actually feeling. He had been tired for a few days but as usual he was still eager to do everything. In fact, even...
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....
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...
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...
Last Tuesday, May 19th, Bernat visited the hospital to receive another blood transfusion. Since we visit the hospital every three weeks, we want to tell you what happens during these special treatments. Today, we would like to explain what these visits consist of, and...
Last weekend, Bernat had a visit with the Neurological Team of the Sant Joan de Déu Hospital. They had him marked for a strict follow-up due to the psychomotor delay that caused the creation of the Pyruvate Kinase Deficiency Disease. The great difficulty in...
Yesterday, Bernat received a new blood transfusion. The fiftieth one, including all the blood transfusions he has had in the past three years. He is always brave, and in the photo one can see that he is calm and happy. We want to take...
Today is a special day, it’s the day that we open the new website called El Petit Bernat (Little Bernat), a site dedicated to Bernat and his illness: Pyruvate Kinase Deficiency. With this site, Bernat’s parents want to make this disease known to people,...
Today, the children of the Day Hospital received a very sweet gift: two chocolate sculptures that are authentic works of art. The bakery Llorenç from Viladecans created these treats voluntarily, and brought a little bit of happiness to the children that were there. One sculpture...
At the Day Hospital, the nervous children are awaiting the upcoming holiday. Three Kings Day or “Little Christmas” has distracted them of their worries due to a very special visit. FC Barcelona Players, Rakitic and Mascherano, have made an appearance at the hospital with...
After a while, we questioned if the Pyruvate Kinase Deficiency is in the Metabolic Guide of Sant Juan de Deu, and now we can happily say: it is! Thus, the Metabolic Guide increases the number of Inborn Metabolic Errors to 68 diseases in its...
