April 10th, 2023 Update: Sonny’s lungs have been healed!!
I want to recap the health situation Sonny has dealt with for some better understanding of what the heck actually happened. This is a bit delayed, and I apologize for that, but between processing the news, adjusting to a new schedule, and trying to figure out what we wanted to say…updates got shelved for a minute.
Dermatomyositis was Sonny’s diagnosis in February of 2022. This is a rare, dangerous autoimmune disease that attacks the skin and muscle, but can usually be kept under control with medication. However, there is another form, or “complication” of dermatomyositis that’s even more rare: the body will produce an extremely aggressive antibody (MDA-5) that attacks the lungs.
90% of people with this form die before even getting a diagnosis.
Outside of that, the survival rate (for people in his situation) is about 0%, except for the random case study here and there. This form is nearly impossible to get under control because the meds take too long (or don’t work) and the disease progresses too quickly. For example - Sonny had just started experiencing strange symptoms November 25th 2021: he was diagnosed 8 weeks later, put on oxygen, and in 3 days hospitalized with acute lung failure. He was intubated and put on life support just a week after (despite the chemo treatments, blood plasma exchanges etc).
Coming home from the hospital was a combination of so many miracles. To name a few…
1. Acceptance to Duke and making a safe transfer
2. Surviving the removal of all life support
3. Surviving a severe lung collapse in the LTAC.
4. And Sonny having the strength and will to persevere through months of literal torture…the list goes on.
However, the energy of every medical professional was more curious than hopeful, more like “wait and see, enjoy the time you have because we don’t know how much he’s got left”.
No-one knew how much progress he would/could make, but even his physical therapist told us very sternly that he would NEVER come off oxygen…ever. Scans showed that while the inflammation had gotten better, the fibrosis (lung scarring) was pretty severe and it is not reversible. We didn’t know if he could ever gain more than 40% lung function, and a transplant was still a part of every pulmonary visit conversation. Any contraction of respiratory illness was likely to send him back to the hospital or “push him over the edge” (as our doctors put it). Meanwhile, he was on a high dose of immunosuppressants - you can imagine how scary it was for us to live in that space.
In February of this year, it was time for new CT scans.
Those results are what we are here to talk about.
Remember all of that fibrosis, aka permanent scarring in his lungs that is irreversible?
It’s gone. It’s all gone.
Our doctor was stunned, he thought he was looking at a different patient’s scans.
After Sonny jokingly asked about potentially needing a transplant, the doc said “Transplant? Why would you want a transplant? You’ve got good lungs!”
Right now, Sonny is off oxygen for everything. He doesn’t even bring any to keep nearby…it’s really, really incredible. A miracle, among so many.
We are thanking our kind, benevolent, generous, merciful God for not only giving Sonny more time on this earth, but for giving him the health and strength to live it as fiercely as before. We are also thanking all of you who prayed for us and with us, and every single being who we’ve seen God’s face in while walking this road.
NOTE: this does not mean that the dermatomyositis is gone. It could simply be dormant.
He takes the max daily dose of CellCept (an immunosuppressant) to keep the disease under control, and we still watch his blood levels closely to monitor and address flare ups as needed, since it progressed so quickly in the past.
However, Sonny’s lungs have been restored, which has felt like the most incredible, undeniable miracle that we have witnessed so far. And we honestly don’t really worry anymore about the rest because we know from experience, nothing is impossible.
Note from Sonny: “Thanks to everyone. & sorry if I haven’t responded to messages. It’s hard to prioritize when I had to face death as an option a few times. Not sure of what my new normal is or how long it’s gonna last but I keep moving forward. For those that came to my family’s aide in my darkest hour my heart will forever be in your debt. Your love and generosity echoes into the future & letting me know that no matter what happens my little pack would be cared for. I appreciate you for this. And my mind was given great peace. Once again…. Thank you so much.”
June 8th Update: We got our miracle. SONNY IS HOME.
He arrived yesterday with Jona. Doctors cleared him to move home due to his achievements in physical therapy and ability to scale back the amount of oxygen he needed during the day. Jona and Sonny are so thrilled to be home together (for the first time since February) making adjustments to the space as needed, and preparing for the kids to join them next week. He is home due to his immense strength (physical and mental), his wonderful medical team(s), the insistence of his family and friends (YOU) to continue prayers and support throughout this, and the grace of God. It’s all still so surreal for us. We will definitely share more about what things look like moving forward, but for now, we hope you can all feel the hope and joy we have for the future.
March 11th Update: It is with heavy hearts that we announce Sonny is no longer a candidate for the transplant due to the recently confirmed presence of a dangerous bacteria, Burkholderia Cenocepacia.
Please join us in praying for a miracle.
(Read the full update on our Facebook Page or GoFundMe campaign.)
We had a wonderful event on March 20th (two days after Sonny’s birthday) in Downtown Woodstock, where participants raised over $5,000 for Sonny and his family in just four hours. Click here to see videos and pictures from the event.
Other ways to participate in supporting Sonny & his family:
Shop at BlueFrog Imports + Appalachian Outfitters Raffle + "River Wolf" Edition Kayak Raffle + Enter the Fishing Tournament
Diagnosis & Wedding
On February 1st local musician, fisherman, and dedicated father to three, Sonny Legaspi, was suddenly hospitalized due to the aggressive onset of two rare autoimmune diseases. Doctors are still looking for a treatment that will slow the progression of these diseases, while also waiting for an emergency double-lung transplant at Duke, NC to save his life.
February 11th, he surprised us all, by waking from sedation hours before expected, and fully himself. The first thing his doctor suggested was that the hospital throw together something Sonny had been asking for since first arriving at the hospital: a wedding for the love of his life.
In less than 5 hours; family, friends, and their three children were gathered around the Wellstar Kennestone Garden, cheering the new Mr. & Mrs. Legaspi. Healthcare staff were gathered at the windows on every floor, waving and holding signs congratulating the couple.
Sonny’s condition and needs overall haven't changed; there's still a long road ahead and we have no clue what we're in for. But we have hope that miracles can happen.
Our wildest hopes have been realized.
Sonny is a medical marvel and walking miracle, on track to make a full recovery.
Brian Schiller with NuCanoe talks to Everett Park about how he met the River Wolf and who Sonny is as a fisherman and friend.
Listen on Apple Podcasts | Listen on Spotify
More About Sonny
Sonny is a man of many talents and passions. You may have seen him around the greater Atlanta area performing on the patio at Izumi’s Woodstock/Cumming, XenGo Fusion, fishing off of his kayak, or playing with his kids at the local parks.
2018 Kayak Angler Feature
2020 NuCanoe Video Interview
2020 Single “Holy Waters” Stream on Apple Music, Spotify, or Buy on iTunes
