our pain is only eased by the joy and love that eduardo brings into our lives.

We are Paulo and Débora, and this is the story of our family.

Our son, Eduardo, is now two and a half years old. Despite being a very active, playful, joyful, and fun-loving child, he has always experienced developmental delays. He was slow to roll over, sit up, smile, and crawl. He has always had hypotonia, and today he walks with support and difficulty.

He undergoes hours of therapy every day to try to develop and reach the stage he is at today. For months, we searched for the cause of these delays until, in November 2023, he had a fever-induced seizure that lasted more than an hour. It was horrible. That was when we did a genetic test and received the news that took all the joy from our lives at that moment. He was diagnosed with a genetic disease called Spastic Paraplegia Type 50, or SPG50, a condition that affects around 100 people in the world, and as far as we know, Eduardo is the only one in Brazil.

It is a genetic disease that will gradually take away our boy's ability to walk, talk, hold things, and smile.

On the day of the diagnosis, our lives completely lost their meaning. In Brazil, since this is a completely unknown disease, we couldn’t find any guidance, hope, or solution. Thankfully, within a few days, we were welcomed by Terry’s team, a true force of nature. Terry’s son was diagnosed with the same condition, and he moved mountains to find a treatment.

We discovered that Terry had launched a major fundraising campaign and managed to develop a treatment that is quite promising in stopping the progression of the disease.

Terry didn't stop with his son's treatment and dedicated his life to helping children like Eduardo. Thanks to him and other wonderful people who welcomed us and are dedicated to saving the lives of these children, our lives found meaning again. We now fight for our son's chances.

There will be a new phase of treatment that could save Eduardo's life. This is now the purpose of our lives.

The entire team involved in the treatment has been incredibly supportive, and we hope our son has a chance of receiving the medication if the treatment goes ahead.

I say "if it happens" because we were informed that the team has faced funding issues. Now, all of us—families, companies, and institutions involved—are racing against time to raise the resources needed for this treatment to happen and save our children.

Today, all our effort and pain are focused on reaching this goal. Our pain is only eased by the joy and love that Eduardo brings into our lives.