Fellipe Gabriel da Costa Aguiar, Tight Filum Terminale Syndrome or Cord-Traction Syndrome. Descent of the Cerebellar Tonsils (DCT)

Published by ICSEB at 12 May, 2017

Date of surgery: 01/09/2016
Video recorded on: 21/09/2016

Marcio and Daiane, the parents of 4-year-old Fellipe Gabriel, wanted to share in this video their experience about obtaining the right diagnosis and how they found a treatment for their son. His mother tells us, that the boy started to have a lot of headaches, he was sleepy, he did not feel like going to school and was losing strength and mobility.

“It has been a long struggle to arrive here, at the Institute”, explains Daiane. She consulted different doctors who told her that her son would have to live with the pains. There was the option to have him undergo a craniectomy, but that would not have help much according to the same doctors and it could be that it would do him more damage than benefits.

She therefore decided to research the Internet and that is how she got to know other mothers. She started chatting with them and discovered the ICSEB. “I researched the Institut, but I did not think that it was going to be possible. We did not have the financial means so that he be operated here in Barcelona”, she explains. But, she she realized that the only option that she had been given in Brazil was the craniectomy, which she did not believe to be feasible because of the possible sequelae that could come with this kind of surgery, she and her husband started a campaign to raise funds for their family’s trip to Barcelona.

Almost a month after the surgery, Daiane is already celebrating some of the changes she notices in her son. “Fellipe was affected by a loss of sensitivity that I had not noticed, and now he only has improvements. So I recommend it a lot [the treatment] for everyone. Investigate if you have doubts. Do not settle with the first diagnosis, the first doctor. You have to look out for yourself, research on the Internet and do not be scared to go abroad, do not be scared to start a campaign [to raise funds].”

To end, Marcio, Fellipe’s father also wants to transmit optimism and encouragement to those who are now living with the same uncertainty that his family experienced. “There is no need to be afraid, you have to fight, and everything will go well”.

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