Bruno he turned ten in October and in a few months he will become a pioneer. You will be one of the first three children with acquired brain damage participants in a novel trial with mother cells which aims to improve your quality of life. It is going to take place in the Hospital Niño Jesús and it is the result of the efforts of his parents, Macarena and Rafael; by Paloma Pastor, president of the No Harm Foundation, and of the researchers who have high hopes for the positive results of this therapy that, for these children, can mean a substantial improvement in their day-to-day life.
Acquired brain damage (ACD) is that which occurs suddenly in the brain and occurs at some point after birth due to traumatic or non-traumatic causes (head injury, stroke, drowning, brain tumor, meningitis …) . It is estimated that 191 cases occur for every 100,000 children a year.
But, let us start at the beginning. Bruno was born healthy. Until he was 4 and a half years old, he was a “smiling and enjoying” child, recalls his mother in conversation with ABC. In February 2015, a severe headache That caused him to cry while playing hide and seek with his family at home marked the beginning of a new path. «That day we did not give importance to him. The next morning we went down to the pediatrician and he was the one who detected that there was a neurological problem and sent us to the hospital. That is where our great nightmare began », remembers Macarena. After performing an MRI and seeing the damage, the UCI team rushed him away. «The last thing we heard him was shouting: ‘mama’», how with integrity his mother. And they were his last words literally because the Bruno they met later could no longer speak. He was no longer the boy they knew. It was in a vegetable state. The diagnosis: a romboencefalitis (trunk encephalitis). He had the worst encephalitis (inflammation of the brain) and after years of tests they have not been able to know what the cause was.
To understand what state his son was in, the neurologist gave them this example, as Rafael recalls: «Imagine that in a five-storey building in perfect condition an explosion occurs right at the portal. The building is still in perfect condition, but no one can enter or leave it. This is called locked-in syndrome. We do not know the information that reaches him or what he can issue. In total, Bruno spent one month in the ICU and six admitted to the hospital. They entered in February and left in September with a totally dependent child. «It remained in a vegetal state and based on a lot of stimulation work we have managed to make it connected to reality. Today he recognizes us, tries to respond to us with gestures. If you call him, look. He understands what you say to him. But he’s also very frustrated and cries a lot when he can’t do something, “explains Macarena.
Bruno has several weekly sessions of motor and respiratory physiotherapy and speech therapy. Thanks to the exercises, he is able to hold his neck for a minute, he can sit for a while, stand up with help … But rehabilitation, in addition to being very expensive, 2,000 euros per month, and not subsidized (everything they have to pay out of pocket), has its limits. Bruno’s parents have their hopes pinned on the stem cell therapy. The first they heard about its potential benefits was the neurologist who handled Bruno’s case at Hospital La Paz.
Later, they learned of three neurologists who had a project in hand at the Niño Jesús Hospital, which is also the only public center in our country that has a Childhood Acquired Brain Damage Unit. “We spoke with them to request a compassionate use of this treatment from the Spanish Medicines Agency (Aemps) and it was the Agency itself that suggested setting up a clinical trial,” recalls Macarena. This was two and a half years ago and, finally, in August of this year “the big news” arrived: it was approved. “It was a rush,” admits Bruno’s mother.
Behind these two projects is also Paloma Pastor, mother of a child with acquired brain damage and president of the Fundación sin Daño, which has been fighting since 2011 to ensure that children with these injuries have the same possibilities of rehabilitation in public health as adults. “Before, children did not survive injuries of this kind. Now in ICUs they have the means to take them forward and a new need arises ”, he explains. When the head of the Neuropediatrics of the Child Jesus department told her that with the treatment of stem cells in adults they had seen improvement, and that they would like to do a trial in children, Paloma got down to work seek private financing. «With traditional rehabilitation, at first you advance quickly, but then you become chronic. I believe that stem cells are the future because to continue improving it is necessary to repair what is damaged, “he says.
In principle, as Macarena explains, Bruno is expected to start receiving the infusion of stem cells through the bone marrow in February 2021. He and two other minors with age characteristics and affectation due to acquired brain damage similar to his. These stem cells are drawn to the area of injury, where they automatically they start to repair the tissue becoming the necessary cell and calling on more cells for their help. Something simple at first sight and at the same time miraculous ”, relates Bruno’s father.
If all goes well with these three little ones, the trial will be extended to more children. There are already a hundred on the waiting list. «El Niño Jesús is the only hospital that is doing something for acquired brain damage. We are pioneers. And the dream is that this trial becomes a drug, “says Macarena. Carrying out this research costs a lot of money. The treatment of each child costs between 15,000 and 20,000 euros, so they need to raise more funds. With this objective, they have launched a crowdfunding campaign on the web migranodearena.org under the motto « Stem cells for Bruno and many more».
The parents of this little boy have very high expectations for this essay, but they are realistic. “The doctors are very cautious, they believe that it will give him quality of life and we are going to notice it a lot,” concludes Macarena, who, after going through her mourning, has already assumed that she will not recover the Bruno of five years ago, but believe it can be a very big improvement opportunity.