Donation protected
In mid-December 2021, after a year of progressing symptoms and continual misdiagnoses: anxiety, depression, panic attacks, falling, lack of mobility, not being able to “jump”, “foot drop”, slurred speech and now minimal speech, muscle twitches & weakness... Mario did an EMG test at a neuro muscular center and we were told there’s a high possibility Mario has early onset ALS- a neuro degenerative disease, at only 35 years old. One of the biggest gut punches ever & out of body experiences, after months of being reassured by neurologists that there was “no way” it was ALS and his neurologist reluctantly gave us a referral so we could simply cross it off the list.
To go from Olympic Weight Lifting, skateboarding & going to school full time for his Masters Degree to needing help getting out of bed & having to use a walker within a little over a year is mind-blowing. Not only that, but they believe he has “Bulbar”, upper neuron onset, which has a much more progressive & discouraging prognosis according to conventional medicine. The neurologist teared up as she told us this news and essentially only gave us options to make “life comfortable”, as his lung capacity was deemed too low to be eligible for any trials. We left in shock & disbelief as we continued to do research on other things it could be or possibly things they overlooked.
Most days it doesn’t feel like real life. It feels like a bad dream that we’ll hopefully wake up from any minute. Anyone who knows Mario, knows the big & impactful presence he brings to anyone who meets him- from his love, humor, laugh, hard work ethic, passion & desire to help others. Currently it’s as though Mario is trapped in his body, because HE is still there & his mind is still sharp... he just can’t move or communicate like he was a year and a half ago. Not being able to communicate like he used to has been one of the hardest parts about all of this for Mario.
Unfortunately there is no definite scan or blood work that can confirm this diagnosis, as he doesn’t have the “genetic gene”, which is only 10% of cases. It’s a process of elimination after a lumbar puncture, countless blood tests, MRI’s & CT’s... the EMG is the only tool they can use to “assist” in a diagnosis, but the rest is all based on clinical observation.
To just accept this & not research options and fight to live was simply not an option for us. While in denial the first couple of months, his symptoms have continued gradually & some have maintained through hard work with his therapies and proper nutrition. Regardless, we still have hope! We know God can do anything! He isn’t limited by anything- not doctors, not human knowledge or modern medicine.
After spending HOURS researching, I’ve found a TON of people online in Healing ALS Facebook groups and websites who have not only stopped their progression & extended their lives, but even reversed symptoms through natural remedies, nutrition, supplements and unconventional therapies ( https://healingals.org , https://www.alswinners.com ). The fact this isn’t shared or recognized by neurologists and conventional medicine is beyond frustrating.
We were pretty much given Mario’s death certificate upon diagnosis with no hope. This simply would not do and as a lot of us have learned over the last couple of years, traditional medicine, doctors, Big Pharma & the FDA are limited to what they’re taught, share and what brings in $$$. Because ALS is considered incurable & progressive, as well as there is no known “cause”, there is minimal research done in the field traditional medicine, because there’s no money in it for Big Pharma- if we’re being honest. However, science & functional medicine shows there are plenty of factors that can cause neuro degeneration- emotional trauma, physical trauma, gut health, chemicals, etc- so we start there & start targeting those factors that led to his symptoms to start.
We operate from a different system. A system based on hope in Jesus Christ, who is the ultimate healer, redeemer and great physician. We know God can heal Mario- whether through these therapies & unconventional medicine or miraculously with no explanation. We are not limited to what man says can or can’t happen and have found success stories of others who have gotten better, that doctors say are the “very few who beat this” cruel disease. Although a lot of days are extremely difficult & discouraging, we also have plenty of days filled with hope & little victories. We keep holding on to hope & faith in the Lord, knowing that He’s so much bigger than all of this, which keeps us persevering & not throwing up a white flag.
Mario dreams of the day he gets his voice back, so he can talk & banter again... so our baby girl Jolene can hear his voice for the first time & smile in response, as well as so he can have long & deep conversations with me and other loved ones like he used to. He dreams about holding, dancing & playing with both our girls. We dream about having more kids, like we have always said since we first started dating 16+ years ago. He wants to walk both our girls down the aisle when they get married one day and we dream about growing old together & playing with our grandbabies down the road. We know this is possible if the Lord heals him, but we have to continue to PRAY & FIGHT. We can’t do this alone and are calling upon anyone who feels led to pray & help us fight for Mario to heal & get better, so he can live many more years and live out dreams for our family.
Our little girls don’t understand why daddy isn’t getting better even after we go to the doctor... Maylene has “called the doctor” on her pretend phone begging to help daddy get better and cries when we pray at night for The Lord to heal him, because it hasn’t happen yet... With help, Mario has a fighting chance to stop his progression & even reverse symptoms like others have.
Currently we have therapy & appointments 3 days a week.
•acupuncture 1x week (3 sessions in a row) •functional doctor/hyperbaric oxygen chamber 2x week
Things not covered by insurance:
Acupuncture: $2,500/30 sessions (3 a week)
Supplements: $1500-$2000/month
Whole 30/Clean Meal Prepped meals for his diet: $100/$150 week
Hyperbaric oxygen chamber: $2970/30 sessions (2 a week)
Additional functional doctors appointments: $150-$350/appointment
Childcare while at appointments: $1000+/month
We’ve also started going to a promising clinic (Body Science- https://www.bodyscience.life ) in Miami that specializes in new science based treatment specifically for Neurodegenerative diseases- $7,500-$8,500/week.... not including travel & lodging in Miami while doing treatment.
Mario currently gets minimal SSI disability, because he’s so young and has barely put in to it... it covers our health insurance & car insurance essentially. I’m limited on my time & finances due to juggling being self employed as a photographer, caretaking for mario full time, driving him to all of his appointments, taking care of our 2 little girls and paying for all of his supplements, therapies & organic nutrition not covered by insurance.
The average cost annually to properly take care of someone with ALS is $150,000-$200,000 (Google it)... and this doesn’t include therapies outside of what insurance covers. This is the part people don’t realize... and this isn’t even regular bills, etc.
The reason some people live so long with it or get better (read the success stories online) comes down to 2 things usually:
•multiple quality caregivers who truly care about the individual (so 1 person doesn’t get burnt out)
•and $...
As a self-employed photographer, I’m limited on how much I can work & how much I can make, but at the same time, we’re blessed by the flexibility, so I can take care of mario full time.
Without financial help, we won’t be able to get after this cruel disease by using alternative therapies due to the financial cost of them, as well as me being spread thin. We have Mario doing all the things we have found have helped past victims get better or stop progression. We’re now humbly asking for any help possible to help Mario keep fighting & to heal We know that God can do it and has led us on to the path we’re on for him to get better.
Please only reach out if your encouragement is hopeful, positive, life giving & uplifting! Mario doesn’t want any one feeling sorry for the him or treating him differently. Hope is essential. Although this is extremely difficult & heavy, we know the Lord is bigger than any of this & has the final say.
If you’d like to help financially through a different $ transfer method, please let us know ❤️
If you’re a close friend or family member and can dedicate time to helping watch our girls at home or helping caretake/hanging out with Mario, so I’m not spread so thin- please let us know.
Help Mario Fight For Life ☝
To go from Olympic Weight Lifting, skateboarding & going to school full time for his Masters Degree to needing help getting out of bed & having to use a walker within a little over a year is mind-blowing. Not only that, but they believe he has “Bulbar”, upper neuron onset, which has a much more progressive & discouraging prognosis according to conventional medicine. The neurologist teared up as she told us this news and essentially only gave us options to make “life comfortable”, as his lung capacity was deemed too low to be eligible for any trials. We left in shock & disbelief as we continued to do research on other things it could be or possibly things they overlooked.
Most days it doesn’t feel like real life. It feels like a bad dream that we’ll hopefully wake up from any minute. Anyone who knows Mario, knows the big & impactful presence he brings to anyone who meets him- from his love, humor, laugh, hard work ethic, passion & desire to help others. Currently it’s as though Mario is trapped in his body, because HE is still there & his mind is still sharp... he just can’t move or communicate like he was a year and a half ago. Not being able to communicate like he used to has been one of the hardest parts about all of this for Mario.
Unfortunately there is no definite scan or blood work that can confirm this diagnosis, as he doesn’t have the “genetic gene”, which is only 10% of cases. It’s a process of elimination after a lumbar puncture, countless blood tests, MRI’s & CT’s... the EMG is the only tool they can use to “assist” in a diagnosis, but the rest is all based on clinical observation.
To just accept this & not research options and fight to live was simply not an option for us. While in denial the first couple of months, his symptoms have continued gradually & some have maintained through hard work with his therapies and proper nutrition. Regardless, we still have hope! We know God can do anything! He isn’t limited by anything- not doctors, not human knowledge or modern medicine.
After spending HOURS researching, I’ve found a TON of people online in Healing ALS Facebook groups and websites who have not only stopped their progression & extended their lives, but even reversed symptoms through natural remedies, nutrition, supplements and unconventional therapies ( https://healingals.org , https://www.alswinners.com ). The fact this isn’t shared or recognized by neurologists and conventional medicine is beyond frustrating.
We were pretty much given Mario’s death certificate upon diagnosis with no hope. This simply would not do and as a lot of us have learned over the last couple of years, traditional medicine, doctors, Big Pharma & the FDA are limited to what they’re taught, share and what brings in $$$. Because ALS is considered incurable & progressive, as well as there is no known “cause”, there is minimal research done in the field traditional medicine, because there’s no money in it for Big Pharma- if we’re being honest. However, science & functional medicine shows there are plenty of factors that can cause neuro degeneration- emotional trauma, physical trauma, gut health, chemicals, etc- so we start there & start targeting those factors that led to his symptoms to start.
We operate from a different system. A system based on hope in Jesus Christ, who is the ultimate healer, redeemer and great physician. We know God can heal Mario- whether through these therapies & unconventional medicine or miraculously with no explanation. We are not limited to what man says can or can’t happen and have found success stories of others who have gotten better, that doctors say are the “very few who beat this” cruel disease. Although a lot of days are extremely difficult & discouraging, we also have plenty of days filled with hope & little victories. We keep holding on to hope & faith in the Lord, knowing that He’s so much bigger than all of this, which keeps us persevering & not throwing up a white flag.
Mario dreams of the day he gets his voice back, so he can talk & banter again... so our baby girl Jolene can hear his voice for the first time & smile in response, as well as so he can have long & deep conversations with me and other loved ones like he used to. He dreams about holding, dancing & playing with both our girls. We dream about having more kids, like we have always said since we first started dating 16+ years ago. He wants to walk both our girls down the aisle when they get married one day and we dream about growing old together & playing with our grandbabies down the road. We know this is possible if the Lord heals him, but we have to continue to PRAY & FIGHT. We can’t do this alone and are calling upon anyone who feels led to pray & help us fight for Mario to heal & get better, so he can live many more years and live out dreams for our family.
Our little girls don’t understand why daddy isn’t getting better even after we go to the doctor... Maylene has “called the doctor” on her pretend phone begging to help daddy get better and cries when we pray at night for The Lord to heal him, because it hasn’t happen yet... With help, Mario has a fighting chance to stop his progression & even reverse symptoms like others have.
Currently we have therapy & appointments 3 days a week.
•acupuncture 1x week (3 sessions in a row) •functional doctor/hyperbaric oxygen chamber 2x week
Things not covered by insurance:
Acupuncture: $2,500/30 sessions (3 a week)
Supplements: $1500-$2000/month
Whole 30/Clean Meal Prepped meals for his diet: $100/$150 week
Hyperbaric oxygen chamber: $2970/30 sessions (2 a week)
Additional functional doctors appointments: $150-$350/appointment
Childcare while at appointments: $1000+/month
We’ve also started going to a promising clinic (Body Science- https://www.bodyscience.life ) in Miami that specializes in new science based treatment specifically for Neurodegenerative diseases- $7,500-$8,500/week.... not including travel & lodging in Miami while doing treatment.
Mario currently gets minimal SSI disability, because he’s so young and has barely put in to it... it covers our health insurance & car insurance essentially. I’m limited on my time & finances due to juggling being self employed as a photographer, caretaking for mario full time, driving him to all of his appointments, taking care of our 2 little girls and paying for all of his supplements, therapies & organic nutrition not covered by insurance.
The average cost annually to properly take care of someone with ALS is $150,000-$200,000 (Google it)... and this doesn’t include therapies outside of what insurance covers. This is the part people don’t realize... and this isn’t even regular bills, etc.
The reason some people live so long with it or get better (read the success stories online) comes down to 2 things usually:
•multiple quality caregivers who truly care about the individual (so 1 person doesn’t get burnt out)
•and $...
As a self-employed photographer, I’m limited on how much I can work & how much I can make, but at the same time, we’re blessed by the flexibility, so I can take care of mario full time.
Without financial help, we won’t be able to get after this cruel disease by using alternative therapies due to the financial cost of them, as well as me being spread thin. We have Mario doing all the things we have found have helped past victims get better or stop progression. We’re now humbly asking for any help possible to help Mario keep fighting & to heal We know that God can do it and has led us on to the path we’re on for him to get better.
Please only reach out if your encouragement is hopeful, positive, life giving & uplifting! Mario doesn’t want any one feeling sorry for the him or treating him differently. Hope is essential. Although this is extremely difficult & heavy, we know the Lord is bigger than any of this & has the final say.
If you’d like to help financially through a different $ transfer method, please let us know ❤️
If you’re a close friend or family member and can dedicate time to helping watch our girls at home or helping caretake/hanging out with Mario, so I’m not spread so thin- please let us know.
Help Mario Fight For Life ☝
Organizer
Jessica Di Bella
Organizer
Walnut, CA