I have created this GoFundMe page with the hope of reaching as many people as possible to share the story of an incredibly strong mother I have known since high school — one of my dearest friends.

This is the story of Florana and her resilient and brave son, Ale. Their journey is one of courage, love, and unwavering strength in the face of challenges no family should have to face alone. By sharing their story, I hope to bring awareness, support, and kindness from a community that can help them during this difficult time:

I want to share the journey our family is living — one filled with challenges, resilience, and an unwavering love for my youngest son, Ale.

There is no force greater than the love a parent feels for a child. Since the day Ale was born, that love has moved us to move heaven and earth, one day at a time, to give him the medical care he needs.

Ale’s Diagnosis

Ale was born with Sturge-Weber Syndrome, a rare neurological condition caused by malformations in the capillaries of the brain, skin, and eyes. A disease is classified as rare in the European Union when it affects fewer than 1 in 2,000 people. Sturge-Weber Syndrome is even rarer, occurring in approximately 1 in every 20,000 to 50,000 births.

Because of this condition, Ale lives with:

The Fight to Save His Vision

From the moment he was born, treating Ale’s congenital glaucoma became an urgent priority. Untreated glaucoma is one of the leading causes of irreversible blindness. Elevated intraocular pressure damages the optic nerve permanently.

In Ale’s case, glaucoma management is far more complex due to the underlying vascular malformation associated with Sturge-Weber Syndrome.

Although he has been evaluated and followed by specialists in Costa Rica, the majority of his care has taken place in the United States. There are very few specialists worldwide with experience treating glaucoma in patients with Sturge-Weber Syndrome. Because this condition is so rare, very few physicians have the expertise required to manage complex cases like Ale’s.

Over his 15 years of life, Ale has undergone 13 surgeries on his left eye, the first at just one month old, all in an effort to regulate eye pressure and preserve his vision.

Recent Complications

On January 10, 2024, Ale underwent surgery due to dangerously high intraocular pressure. A second valve was implanted, and a cataract that covered almost his entire visual field was removed.

Days later, he suffered severe complications:

He required emergency surgeries again on January 19 and March 22, 2024.

Following these complications, Ale completely lost vision in his left eye. The recovery has required strict rest, intense care, and immense patience as we wait for the hemorrhage to gradually reabsorb and healing to take place.

We continue to follow all medical recommendations and await upcoming evaluations in the United States to determine the next steps. Meanwhile, trusted colleagues in Costa Rica are helping monitor him until we can travel again.

His most recent surgery was performed on March 27, in an attempt to help him regain his vision.

The Financial Reality

All of Ale’s surgeries and treatments in the United States have been paid entirely out-of-pocket. Because this condition has been present since birth and we are not U.S. citizens, we do not qualify for U.S. medical insurance coverage.

The financial burden includes:

I work in private practice, which means that when I travel for Ale’s care, I am unable to generate income during that time.

Initially, I took out a personal bank loan to cover the costs. However, after the unexpected complications and multiple emergency surgeries within weeks of each other, the expenses have become overwhelming. It feels like more than I can carry alone.

More Than Vision: Treating His Port-Wine Stain

Another manifestation of Sturge-Weber Syndrome in Ale is the extensive port-wine stain covering most of his face.

While some individuals have this birthmark, in Ale’s case it is part of the syndrome. Over time, untreated port-wine stains can thicken, form nodules, bleed spontaneously, and cause functional impairments, not just cosmetic changes.

Since infancy, Ale has undergone more than 40 laser treatments abroad. These were not cosmetic procedures — they were therapeutic interventions aimed at preventing long-term complications.

When Ale was born, the National Children’s Hospital in Costa Rica had the appropriate laser technology, but it was out of service with no replacement available. Therefore, since he was one month old, we have traveled to the USA for treatment with specialized equipment designed specifically for vascular malformations like his.

In the United States, medical insurance covers these treatments because they are recognized as reconstructive and medically necessary — not cosmetic.

There is now a newer laser technology available in the U.S. that penetrates deeper and can more effectively treat the deeper vessels that earlier equipment could not reach. Despite the many treatments Ale has already endured, those deeper untreated vessels are now the ones affecting him and will require lifelong management.

We have temporarily paused this treatment in recent years to focus on stabilizing his glaucoma, but it remains an important part of preserving his long-term health and quality of life.

Why We Are Asking for Help

Opening my heart and sharing our story is not easy. But the reality is that we cannot do this alone anymore.

We are asking for your support so that financial limitations will not stand in the way of Ale receiving the specialized medical care he urgently needs, now and in the years ahead.

Your donation will help cover:

Most of all, it will help preserve Ale’s vision, his health, and his quality of life.

If you are unable to donate, sharing this campaign is also a powerful way to help.

Thank you for standing with Ale.

With gratitude and hope.