Walk for Cello! Cure Coats' Disease

Join me in supporting real change. Let’s support good in the world and make a difference. Help us fund research and raise awareness of Coats' Disease to enable early, correct diagnoses, improved treatments, and, ultimately, and a cure for the JACK MCGOVERN COATS' DISEASE FOUNDATION!

Just a small donation will go a long way to helping me meet my goal for the JACK MCGOVERN COATS' DISEASE FOUNDATION

Location and Time for a 5K in-person walk

This year, we are organizing a 5k walk in Livingston, CA, with family and friends at Joseph Gallo Park starting at 7:00 a.m. on June 28, 2025 (we would like to beat the heat, and it happens to be Cello's actual birthday). If you are able to join us, please let me know. We plan to have some donuts and coffee for those joining us on the walk and donating to our fundraiser. Please note this walk at Livingston is separate from the one in San Francisco on June 21st.

You must register for the virtual and in-person walk, which you can do here. The cost is $30 for adults and $20 for youth. While you register, remember to mention that you are walking for "Marcello Montesinos".

WHY do we participate on the annual 5k Cure Coats fundraiser?

Marcello was only 20 months old when we noticed something strange. His left eye began to drift, and like any concerned parents, we rushed to get an appointment. But it was during the height of the Omicron wave of COVID, and it took us two agonizing months to finally see a specialist. At first, we weren’t overly worried—we thought maybe he’d need glasses or an eye patch, just like my husband had as a child. We never imagined it could be something as serious as Coats’ Disease. Like so many others, we had never even heard of it.

The day of Marcello’s appointment is one I will never forget. Dr. Buh at Santa Clara Kaiser spent 45 patient minutes examining his little eyes—no easy task with a wiggly toddler. Then, she noticed something unusual: yellow spots in his eye. I still remember her calm voice as she asked us to wait while she brought in a specialist, Dr. Merrill. Without alarming us, she had us wait for a pediatric ophthalmologist who deals with cases like Marcello’s. When Dr. Merrill looked at Marcello’s eyes, my heart sank. His face said it all before he even spoke the words: “I think your son might have Coats’ Disease.”

I was completely unprepared to hear that our son had a rare, incurable eye disease. Everything felt like a blur as he explained that Marcello needed to be put under anesthesia so they could examine the back of his eye and, if possible, start laser treatment immediately. That same day, Dr. Merrill and Dr. Lewis confirmed that Marcello had blood vessels leaking into his retina, with crystals forming that were blocking his vision. We were terrified, but we knew we had to act.

That first year was the hardest. Marcello had four laser surgeries on his left eye. I can’t even begin to describe the helplessness we felt—fighting through applying eye ointment, patching his eye, and struggling to get him to wear it. We even had to get creative to convince him, which led me to write my first bilingual children’s book, El Pirata y su Parche Magico (The Pirate and his Magical Eye Patch).

As parents, you want to protect your children from the world, but sometimes, you face battles you never saw coming. My husband and I, both having studied fields like robotics, mathematics, and engineering, were used to solving problems. But this was something we couldn’t fix. I can’t count the number of nights we lay awake, asking ourselves the same questions over and over: *Did we catch it in time? Is it getting worse? Are we doing enough?*

We clung to the words of Dr. Merrill and Dr. Lewis, who told us to stay hopeful, even when everything felt so uncertain. And hope is what kept us going. We found strength in connecting with other families at the Jack McGovern Coats Disease Foundation’s annual 5K walk. Their stories, their shared fears, and their unshakable hope reminded us that no matter what, Marcello’s life would be full of joy—playing soccer, running, dancing, and making homemade pasta with me in the kitchen.

By the time of his fourth procedure, we finally received the news we had been praying for. Marcello’s eye had reabsorbed the crystals, the leaking had stopped, and his retina was safe. Marcello, now almost 5 years old, is more vocal—for the first time, he told us that he can’t see that well in his left eye. While his vision is not perfect, it was saved. He now wears his glasses and still patches for a few hours each day. The next upcoming appointments will be to see if Marcello will need another surgery, but this time to strengthen his eye muscles and reduce drift in his eye or what we like to say reduce the appearance of the "curious eye". We are beyond grateful that he can see.

We named our son Marcello because it means "young warrior." And that’s what he is—a warrior, a Coats' Warrior, a child who fights and doesn’t give up. Coats' Disease currently has no cure, but Marcello is living proof that with early detection, treatment, community support, and the incredible work of dedicated doctors, a child’s vision—can be saved.

Thank you for reading about our story and thank you for your generous donation and participation in our 5k Cure for Coats walk! We look forward in seeing you soon!