Meet Lourdes (Luly). She is 37. Her daughter is four. She has ALS.

A mother, and the one who took care of everyone. Now she needs us.

She was diagnosed in July 2025, after almost two years of tests and unanswered questions — her daughter was one when the first symptoms appeared. The disease is moving quickly. This is her story, and an invitation to help while help counts for the most.

This page was built by friends of Luly — Myles & Brooke.

A family facing ALS, together

Her story

Before any of this, Luly was the one who took care of everybody else. Her friends called her the mom of the group — the one who checked that people had eaten, who kept everyone together, who worried about the rest of us long before she worried about herself. She loved music. She loved a house full of people. And she was always the one behind the camera: most of the photographs her friends have from those years exist because Luly took them.

ALS has taken away a lot, but it has not taken away being her mom. I want as much time with my daughter and my family as this life will give me.
Luly

What ALS means

ALS is a progressive disease in which the brain loses its connection to the muscles. One by one, it takes away:

  • Walking
  • Speaking
  • Eating
  • Breathing

There is still no cure.

  • Every 90 minutessomeone in the U.S. is diagnosed with ALS — and someone dies from it.
  • 90%of cases have no known family history or genetic cause. It can happen to anyone.
  • 9–12 monthsis how long a diagnosis typically takes — roughly a quarter of the time a patient has left.
  • 2–5 yearsis how long most people live after being diagnosed.
  • $250,000is the estimated out-of-pocket cost of care. Every year.

Sources: ALS Association — What Is ALS? · CDC, MMWR 2017;66:1379–1382 · ALS Association — Understanding ALS

Luly's timeline

The moments that matter — the good ones and the hard ones. Tap any photo to see it full size.

  1. 1989

    Lourdes Machado is born

    Luly was born and raised in Miami, where she became the caring, dependable friend her loved ones know today.

  2. 2022

    Her daughter is born

    Luly and Ricky's daughter is born, bringing joy and a new chapter in their lives.

  3. August – October 2023

    The first signs

    A fall in August — the kind of thing that happens to anyone. By October, foot drop and weakness in her leg. Without health insurance, she put off seeing a doctor.

  4. 2024

    Wrong answers

    A Miami neurologist runs MRIs, blood work, and EMG nerve testing. Everything comes back negative, and her symptoms are put down to post-COVID neuropathy. Over the year the falls become routine — sometimes several in a day — and she begins using a cane. Four months of physical therapy bring no improvement.

  5. March 2025

    “Keep knocking on doors”

    At a follow-up for something entirely unrelated, her dermatologist sees how far her walking has deteriorated and notices the drop foot in her left leg. She tells Luly not to accept the answer she has been given — and to get to Mayo.

  6. May – June 2025

    Mayo Clinic, Jacksonville

    A neurologist orders a fresh battery of tests. There is no single test for ALS — it is diagnosed only once everything else has been ruled out.

  7. July 25, 2025

    ALS confirmed

    Almost two years after the fall, Luly is diagnosed with ALS. The CDC puts the typical wait at nine to twelve months. Hers took closer to twenty-three.

  8. September 2025

    Care begins at the UM ALS Clinic

    Luly begins treatment at the University of Miami ALS Clinic — a multidisciplinary team covering neurology, respiratory care, nutrition, and physical therapy in one place.

  9. February 2026

    One week with an accessible van

    Her friends put their money together and rented Luly a wheelchair-accessible van. For seven days she could leave the house whenever she wanted. Then the rental ended and the van went back. Her friends are still here and still helping — getting Luly a van of her own is the part we can't do alone.

  10. June 2026

    Walk to Defeat ALS Miami

    Team Maria walked for Luly and finished as one of the event's top fundraising teams, raising $8,292 for the ALS Association.

    Walk to Defeat ALS Miami
  11. July 2026

    A night at loanDepot Park

    During MAD at ALS night, the Marlins recognised Luly and her family on the big screen — and a private donor presented a $2,500 donation.

  12. Today

    Where things stand

    Luly still has no van of her own. The wheelchair, the ramps and her mother's house cover the hours she spends at home; getting her out of it is the part still missing. Her friends have carried this as far as friends can.

How you can help

Every one of these matters. Not all of them cost anything.

Give what you can

Funds go directly to Luly's care, starting with the wheelchair-accessible van she still doesn't have — the one thing that would get her out of the house and back into her daughter's world.

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Media & partnerships

Journalists, organizations, and anyone able to help at scale — please get in touch directly.

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Where your support goes

Every dollar goes to Luly's care and to keeping her family steady. Here is what that actually means.

A van of her own

A wheelchair-accessible van with a ramp and securement. Without one, getting Luly into a regular car takes so long that a doctor's appointment or her daughter's school event can eat half a day — so most days, she just stays home. Not a new van; a good used conversion, which is what makes this reachable.

  • Help at home

    A hospital bed, a transfer lift, bathroom access, ramps and doorway work — the equipment that makes her own home usable.

  • Hands to share the load

    Paid caregiving hours. Luly's mother does most of it through the day; Ricky carries the rest. Professional help means they get to rest — and it means Luly is never left waiting.

  • Therapy that keeps her moving

    Physical and aquatic therapy, and the equipment to make it possible at home. Water takes the weight off joints that no longer support her — it is treatment, not recreation.

  • What insurance leaves behind

    Copays, medications, supplies, and the travel to clinics in Miami and at Mayo. ALS care is constant, and coverage is not.

  • Keeping the household steady

    ALS took Luly's ability to work before it took anything else. Ricky's travel work had to stop too. Rent and bills did not pause. Neither did her daughter's life.

  • Her daughter

    Childcare, counselling, and the ordinary childhood things that shouldn't have to stop — and something put aside for her future.

We won't pretend this is the whole picture. Care for someone with ALS runs into the hundreds of thousands of dollars over the years ahead, and we don't have all of those answers yet. We are not asking for that today. We are asking for the van, and for whatever comes after it.

Team Gleason has already provided Luly's power wheelchair and the ramps at her home, which changed her daily life. We're grateful to them, and we'd encourage anyone who wants to help families living with ALS to look at their work.

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Luly officiating our wedding.

Who's behind this page

Luly is my wife Brooke's best friend, and Ricky is mine. She officiated our wedding. Our daughters are inseparable, and long before any of us had children we were already a family. Luly spent years looking after all of us — this is us looking after her.

— Myles & Brooke