Miles’s Story

Miles stopped growing at around 18 months old.

For two years, we searched for answers, desperate to understand why our little boy wasn’t growing, why something felt wrong.

Along the way, we received misdiagnoses.

We were told it might be diabetes.

We were told it might be a form of dwarfism.

We were told it could be a bone disorder.

At one point, cancer was even mentioned.

Every possibility was terrifying. Every answer felt like a door closing without offering a real explanation.

We kept going, appointment after appointment, because we knew deep down there was something more.

Finally, we learned the truth:

Miles has cystinosis, a rare genetic condition that affects only about 500 people in the U.S.

Getting the real diagnosis was a strange mix of relief and heartbreak.

Relief in finally knowing.

Heartbreak in realizing what it meant for the rest of his life.

Miles is brave in a way no child should have to be.

He takes medications around the clock, endures blood work and doctor visits most adults would struggle with, and still smiles. Still laughs. Still loves.

What Cystinosis Is (More Detail)

Cystinosis is a rare, lifelong genetic disease where the body cannot remove an amino acid called cystine.

Because it builds up inside the cells, it forms crystals that slowly damage organs throughout the body.

It affects the:

• Kidneys (leading to Fanconi syndrome and potential kidney failure)

• Eyes (painful crystal buildup requiring frequent eye drops)

• Muscles and bones

• Thyroid

• Brain

• Growth and overall development

Without treatment, cystinosis is life-threatening.

Even with treatment, it requires constant care.

Miles takes 8 different medications, 8 times per day just to keep his cystine levels controlled so his organs can function.

He will need treatment for the rest of his life, unless a cure is found.

But he is strong.

He is resilient.

And he faces each day with a sweetness and courage that inspires everyone around him.