HENRIQUE NETO STORY OF LEUKODYSTROPHY OF VANISHING WHITE MATTER from MANAUS/AMAZONAS/BRASIL
My name is Henrique Alves, I am the father of Henrique Neto, 12 years old, we are from the city of Manaus, State of Amazonas, Brazil who has the Vanishing Whitte Matter leukodystrophy, EIF2B5 mutation.
Henrique Neto was a normal child of 8 years, studied, played, swam, participated in competitions, it was when, on September 4, 2017, he suffered the first seizure, immediately we sought a neuropediatrician to investigate the cause of the seizure, the neuropediatrician prescribed tomography and magnetic resonance imaging of the skull, and lesions in the white matter of the brain were detected, but only with these tests it was not possible to close the diagnosis.
On October 4, at school, he had 6 seizures, being referred to an emergency hospital, where he remained in hospital for 45 days performing various procedures, such as pulse therapy and other tests.
The new exams, of resonance, again detected the U-shaped lesions, the doctor after several blood and urine tests, decided to prescribe in December 2017 a genetic test to try to close a diagnosis.
In January 2018, the diagnosis of Vanishing White Matter (VWM) leukodystrophy came out in the EIF2B5 mutation, that day we were totally lost and not knowing what to do, we sought out several Brazilian doctors and researchers and none gave due attention to Vanishing White Matter leukodystrophy. , which forced us to seek help outside Brazil.
In February 2018, we were still very sad with the diagnosis, but we already had a scheduled trip to the United States to visit Disney parks, I still didn’t know his future, but I decided to take him to fulfill his dream of visiting the parks. , it was a fantastic trip for him.
In April 2018, Henrique Neto returned to the hospital again due to 5 seizures, staying in the hospital for 30 days undergoing tests and therapies to recover levels of consciousness.
Currently, Henrique Neto has had no seizures since April 2018, with seizures being controlled with 3 types of drugs that are monitored by his neurologist in the city of Manaus, State of Amazonas — Brazil.
Alternative treatments are being performed every day, Henrique Neto’s mother is a speech therapist and nurse, which facilitates the care with him.
As a father, I also do a lot of research, especially with foods and plants typical of the Amazon and that can provide the vitamins and proteins necessary to avoid cell stress and leave the body with strong immunity, I started to study the origin and characteristics of VWM and me I keep Henrique Neto healthy with healthy food and moderate exercise.
He still practices swimming, but, with great care to avoid cell stress or falling saturation, he also studies at home and loves playing on his XBOX ONE, reading, drawing and watching videos on his iPad.
At the present time, I, as a father, went to catalog children with Vanishing White Matter in Brazil and managed to gather a small group of 4 children that we got together looking for research and help around the world.
In Brazil I am currently representing the 4 families with children diagnosed with VWM.
Recently and almost without hope of finding a professional in Brazil, we met Dr. Charles Marques Lourenço who is a geneticist and who participated with Dr. Marjo Vander Knaaap in the VWM natural history studies in the Netherlands and who is helping us a lot with tips and palliative guidelines to keep my son Henrique Neto stable.
Written by Henrique Neto dad
September is Leukodystrophy Awareness Month. Do what you can…spread awareness. Share the stories. Talk about them with friends and family.
Whether you give time, money, effort or love… these kids need our help.
Small amounts of money can have outsized impact in the world of#VanishingWhiteMatterDisease (VWM). Because #leukodystrophies are so rare, therefore research relies heavily on private donations. Even if it’s a small amount, please consider donating to VWM Research.
