Lucas José de Angelo. Neuro-Cranio-Vertebral-Syndrome. Filum Disease. Arnold-Chiari Syndrome Type I, Syringomyelia, Scoliosis and Hydrocephalus.

Published by ICSEB at 25 April, 2017

Surgery date: August 2016

Little Lucas’ New Life

6-year-old patient Lucas José’s parents tell us in this video about their experience from the moment they learned of their son’s diagnosis (Arnold-Chiari Syndrome Type I, Syringomyelia, Scoliosis and Hydrocephalus) up to their last check up appointment here at ICSEB, 30 days after the Sectioning of the Filum Terminale procedure.

“We think that from today onwards, Lucas has a new life and that he is well”, says a relieved Everson Angelo after having accompanied his son through an intense time starting in May 2016. It was then that he and his wife, Lucineia Angelo, found out about the diagnosis. After speaking with the neurologist in charge of Lucas’ case, both were left very worried. The only option they had been given was the craniectomy, “a very invasive surgery that could leave sequelae.”

It was then that the couple decided to research on the Internet to fid out if there was any less invasive treatment for their son. That is how they ended up on the ICSEB website, and this also created doubts for them.

“We were left rather afraid… is this for real? I think the first thing that came to mind was: can this be true? So we started to investigate and found out that other Brazilians had come here. And there were many people who had given their testimonials, who had shared in video and text, who had come here and really found a solution. So we decided to bring Lucas here”, says the patient’s father.”

In order to make the trip to Barcelona viable, their family together with the support of many friends, joined forces for a fundraising campaign. “Thank God we achieved it and were able to bring Lucas here (…) The surgery was very calm, the procedure was very calm, the Institut gave us complete security, he was assessed thoroughly and then he was also assessed afterwards in order to evaluate the progression after the surgery”, he says. Everson says that there was an improvement in many symptoms that Lucas had before the procedure, especially in relation to the sensitivity in the limbs.

Everson took the opportunity of recording the video to thank all those persons who helped them, in Brazil and in Spain. He concludes: “If you have doubts, if you feel scared to travel to undergo this treatment; don’t. I think that if we have this option with proven results and it can be an alternative to another more aggressive treatment; don’t doubt and come!”

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