06/23/2026
With a breaking heart, always overflowing with gratitude….
In late May 2024, roughly 14 months after my oldest daughter, Gianna, took her last breath at age 16, on March 17, 2023, completely out of the blue, Lukas said to me, “I need to be the next one to go. I can’t stand the thought of watching another one of my siblings die.” While his words were brutally honest, they were fueled by lived experience, having survived his beloved sister’s beautifully tragic end-of-life. Over the next several months and even up till this day, he randomly shares how he is planning to spend the rest of his time here on earth, what it will look like when his body no longer serves him as he desires and he’s sick of what myotonic dystrophy is doing to him, and he is ready to transition out of this dimension and on to the infinite that awaits him, as well as how he wishes to be remembered. Lukas informed me that summer of 2024 that he thought he only had two Halloweens left, so he needed to be the one to pick out our family costumes, something that we upheld, even as my oldest son, Giacomo, very unexpectedly entered the final leg of his life in the fall of 2024, and Lukas was starting to become frustrated as he realized that his brother had “cut in line” and was likely to go next, as was ultimately the case, in January of 2025. He has been very adamant that he wants to die on a full moon, reserving his place on my memorial tattoo, which has the kids’ birthdates and their death dates next to the phase of the moon that they were born and died under, permanently marking the days that they took both their first and last breaths.
Lukas has always been very pragmatic and levelheaded, and when he has told me what he feels and what he believes to be coming, I haven’t questioned him. While, of course, we hope he has many years left with us, we’re also painfully aware of the fact that myotonic dystrophy is a thief in the night, having already captured half of my children. Lukas has set three goals for his life, or what remains: graduate from high school, turn 18, and visit Universal Studios in Hollywood. Lukas decided a long time ago that he was not interested in having extraneous measures and life-extending surgeries, meaning that he has decided against having a tracheostomy or a feeding tube, should the need arise. He has made these decisions with great information and experience after having watched his siblings go through insanely painful medical procedures, and endure months, and collectively, years, in an intensive care unit, both one in the hospital, and the one that we’ve had to create in our home. In short, he knows what he wants and what he doesn’t want.
Myotonic dystrophy is a degenerative neurological disease, and one that I have known would very likely take my children’s lives sooner than they deserved. Now we are going on 15 1/2 years since the diagnosis, first with Giacomo at age 6, after 4 1/2 years of me trying to get answers about what was wrong with him, knowing in my gut that something was off. I was pregnant with Isadora and had no clue at that time that anything was awry with her, Lukas, or Gianna, who were 2 and 4, respectively. However, as fate would have it, the day after Isadora was born in January 2011, I received word that both Lukas and Gianna had also tested positively for myotonic dystrophy, and two weeks later, I received the same diagnosis for my youngest babe.
In February of this year, after some indications that Lukas’ digestion had been affected by the disease over the last couple of years, his gut abruptly began to more decidedly shut down in a way that is tragically not possible to recover from. He missed over a month of school and spent a week in the hospital to try to achieve a state of balance, and he is presently existing on a fairly intense regimen to get things to function with what we are just referring to as a “new normal,” as he limps along, knowing that he’s got the same ticking time bomb of a digestive system that ultimately robbed Gianna and Giacomo of their lives.
Many of you have been following our story, some from the beginning, and some joining along the way. We are beyond grateful for all of the kindness, generosity, and support for our family, especially during Giacomo’s final days, known as “G’s Last Stand,” when he decided to forgo dying in the hospital, after watching his beloved sister and best friend spend her final days in agony and medical defeat. We were blessed to spend six weeks together on the road, hitting up as many of Giacomo‘s bucket list items as possible before his epic blast out of this dimension and off to the fifth or beyond, in Sedona, AZ, on January 25, 2025.
During that trip, Lukas began to plan what he wanted for the end of his life, when it seemed like the myotonic dystrophy was coming for him, or “Lukas’ Final Journey,” as he has dubbed it. He talked a lot about how important it would be to travel and make the most out of his final months (and hopefully longer) while he was still feeling OK, as he saw that, as fabulous as G’s trip was, it was sometimes difficult for Giacomo to fully enjoy all of the amazing places that we went to, as his body was shutting down.
And that brings us to today — Lukas recently achieved his first life goal, graduating from high school, and there are now only two things left he wishes to do. He will turn 18 on July 12, and he’s decided to combine the 2ndand 3rd goals by officially celebrating his adulthood at Universal Studios in Hollywood. As opposed to flying, Lukas wants to follow in his big brother’s footsteps and load up that ’95 teal conversion van, Fortuna, once again, and take to the open road, now also adding in some stops along the way, including a visit for some “dog therapy” in Colorado, an extra bucket list item of going to Mount Rushmore, and spending some time in Sedona, a place that has become incredibly sacred to us as a family…
While I certainly didn’t imagine being in this position again so soon, we are hopeful that this trip will be invigorating and renewing for our family, breathing some extra life into whatever precious time we have left together…We are sending out enormous gratitude and thanks to all of you who supported G’s Last Stand and for any and all contributions to this next chapter in our life story, helping Lukas make these final dreams come true (and whatever else he adds to the list), while he still has the time and ability to enjoy them…We hope that he will have several more years with us, but we also know how horrifically and swiftly myotonic dystrophy may take him from us, so we are doing all we can to make “Lukas’ Final Journey” chock full of memories to last for all of our lifetimes and beyond!!
Here we are again... it seems so surreal to be thinking about another "trip of a lifetime". But, as … Dianne Hines needs your support for Lukas' Final Journey
