Help Our Sweet Bleu Fight X-Linked Adrenoleukodystrophy (ALD)

Back in December 2025, our sweet son, Bleu, was diagnosed with X-linked adrenoleukodystrophy (ALD) after a heartbreaking decline during his first-grade year. Before that, we had never even heard of this rare disease.

When Bleu was born, newborn screening for ALD was not yet available in New Jersey. Because of that, his disease wasn’t detected before symptoms began. If it had been caught through newborn screening, he may have had the opportunity for treatment before irreversible damage occurred. That is something we will always wonder about.

Many people ask if this disease runs in our family. As far as we know, there is no family history of ALD, and nothing was knowingly passed down to Bleu. His diagnosis came as a complete shock and changed our lives forever.

What is ALD?

X-linked adrenoleukodystrophy (ALD) is a rare genetic disease that affects the brain, spinal cord, and adrenal glands. It prevents the body from properly breaking down certain fats, causing them to build up and damage the protective covering of nerve cells (myelin). As the disease progresses, children can lose the ability to walk, talk, see, hear, swallow, and communicate. It can also cause adrenal insufficiency, which can become life-threatening without treatment. While there are treatment options for some children if the disease is caught very early, there is currently no cure once significant brain damage has occurred.

Bleu’s journey has happened so quickly.

December 2025 – Bleu was diagnosed with X-linked adrenoleukodystrophy after months of unexplained changes.

January 2026 – He had his first seizure.

February 2026 – We worked to stabilize his adrenal insufficiency and cortisol levels. Around this time, he also began walking into walls and objects as his vision became affected.

March 2026 – Bleu lost his voice. Hearing him speak for the last time is a memory we will carry with us forever.

April–May 2026 – Swallowing became increasingly difficult. After an 11-day hospital stay, Bleu underwent surgery to have a G-tube placed because he could no longer eat safely on his own.

June 2026 – Walking became much harder. He could only take two or three supported steps.

Today – Bleu has lost the ability to walk, talk, and eat on his own. He receives all of his nutrition through his G-tube and requires around-the-clock care.

Even though this disease has taken so much from him, it has never taken away who Bleu is.

Bleu is the sweetest little boy with the biggest heart and the brightest smile. He loves being surrounded by the people who love him. He loves music, cuddles, lots of kisses and simply being with his family. One of his favorite things is to stand, so every day we help him stand several times because it brings him so much joy. Seeing him smile while standing reminds us that, despite everything, he is still our happy little boy.

Right now, Bleu is stable, and we thank God for every single day we have with him. Our goal is to keep him comfortable, safe, and surrounded by love while giving him the best quality of life possible.

We are raising funds to help provide Bleu with:

* Specialized medical equipment

* Adaptive devices that help him stand and participate in daily life

* Home modifications and accessibility needs

* Medical supplies and therapies

* Travel expenses for appointments at CHOP and other specialists

* Activities and experiences that allow him to enjoy life at home and in our backyard with the people who love him most

No parent is ever prepared to watch their child lose abilities one by one. While we cannot stop this disease, we can make every day count. Every donation, every share, and every prayer helps us continue giving Bleu the love, comfort, and care he deserves.

From the bottom of our hearts, thank you for taking the time to read Bleu’s story. Thank you for your kindness, your support, and for helping us make every moment with our beautiful boy as meaningful as possible.

With love and gratitude,

Bleu’s Family