Health rejects the transfer of a child with fibromatosis to a reference center

Health rejects the transfer of a child with fibromatosis to a reference center

Little Aray, in a playground. / C7

The parents of little Aray, 5 years old, collect signatures to demand his referral to a Barcelona hospital specialized in this rare disease

Carmen Delia Aranda

The parents of Aray, a five-year-old boy from Gran Canaria who suffers
neurofibromatosishave started a
collection of signatures on Change.org to ensure that his son is referred to a national reference center in the treatment of this rare disease, given the refusal of the Insular Maternal Hospital of Gran Canaria to accede to this request, alleging that the patient does not meet the clinical criteria for its derivation.

Aray is currently being treated at the hospital in Gran Canaria for this ailment, "a
neurocutaneous disease that can produce tumors throughout the nervous systemvision loss, heart and bone problems”, among others, and which has a prevalence of one case per 3,500 people.

His mother, Magüi Mujica Medina, explains that her son also "has a
complete gene deletion, which is even less prevalent. Only 5% of people with fibromatosis have this deletion, so the neurological problems are more severe." To this we must add that her illness "has led her to suffer from autism spectrum disorder, attention deficit hyperactivity disorder and epilepsy," says Mujica.

The complexity of Aray's painting pushed his parents to
ask the Canarian Health Service for a referral to the San Joan de Deu hospitalin Barcelona, ​​which together with the U. Germans Trias i Pujol Hospital in Badalona, ​​are the only
Centers, Services and Reference Units (CSUR) of the National Health System (SNS) to treat genetic neurocutaneous syndromes, according to evidence
on the website of the Ministry of Health.

«
Here the disease is unknown. They were amazed that she was linked to autism and it turns out that in 40% of cases she presents with an autism spectrum disorder », says Aray's mother. "A neurologist has diagnosed a tortuosity of the optic nerve, another neurologist a thickening of the optic nerve and according to the ophthalmologist she has an optic glioma," adds Mujica.

The truth is that you know that your child is going to develop nerve tumors and needs preventive treatment.

For her part, the head of the Pediatric Service of the Maternal and Child Hospital of Gran Canaria, Svetlana Pavlovic, assures that this case
you do not qualify to be referred to a CSRUR since the Gran Canaria health center can offer "the studies, the treatment and the resources" necessary to treat it.

“Our Pediatric Neurology unit treats more than 100 patients with neurofibromatosis.
It is a disease that we can control in our unit. There is no clinical criterion for the referral of the minor, "says the head of service.

In addition, Pavlovic maintains that the hospital of San Joan de Deu belongs to
private character and that it is not a reference center for the treatment of this type of disease. However, the Catalan hospital does appear on the CSUR list of the Ministry of Health as a national benchmark for dealing with these pathologies.

«
If there is a clinical change, of course the referral will be made, because there is a regulation that protects it, ”acknowledges the doctor. It is precisely this worsening that Aray's mother fears, who prefers that the child be treated preventively before the expected tumors appear.