Support The Premo Family After An Awful Diagnosis

Hi,

My name is Jason and I’m sharing with you a story no one ever wants to write about their loved one. My younger brother Jarett has recently been diagnosed with Amyotrophic Lateral Sclerosis or more commonly referred to as Lou Gehrig's disease or simply ALS. There is no cure and diagnosis is a death sentence usually giving you around 2-5 years to live but this will not be the case for my brother as he was diagnosed with late-stage ALS. He may not see his next birthday and will leave behind his wife, three daughters, and stepson that are 17, 14, 13, and 5 years old. This was unexpecting news of the worst kind and is devastating to Jarett and everyone that loves him.

His path to ALS was not cut in dry, as so often is the case. In 2021, at the young age of 42, Jarett had a pretty bad fall in a hotel room while travelling for business and banged his head and wrist on the wall. This resulted in a severely injured left hand and some cuts on his head, not realizing his neck was slightly injured. After visiting a doctor, it was determined that he injured a nerve in his wrist, and it would take time to heal. Then throughout the year he fell a couple more times always hitting his head which torqued his neck, further injuring it. In the end of 2021, he slipped on the ice and smashed his face, almost losing consciousness. Through all this his left hand is not getting any better, in fact, it was getting much worse and was completely atrophied, literally no longer usable.

As is such in life when you have a family and commitments you just keep at it and he was no different, he was still working, raising his family and just busy with all that life can throw at you when you have young kids. During this time, he is recognizing something might be wrong with the nerves in his arm and is working with a doctor that is telling him it’s a nerve injury and that nerves can take a long time to heal. So, naturally he was thinking all these issues are going to go away and everything will return to normal when he heals.

Now fast forward to the middle of 2022 and his right hand starts to lose function and atrophy just like his left hand. This was VERY alarming because this meant he was soon going to have two unusable hands. After several more doctor visits spanning months, its determined that his series of falls caused a severely bulging disk in his neck, so bulging that it had cut through half of the spinal cord and this is the reason his hands are being affected. This was so alarming that upon discovery at the end of 2022 he was immediately scheduled for surgery to fix the spinal stenosis, and this resulted in a fusion of some vertebrae in his neck to release the pressure on the spinal cord. All of this was hopeful and on the right path to get my brother back and soon he would be back as his old self.

The recovery and rehabilitation went into 2023 and he was not getting any better he was actually getting WORSE. We were all hanging on to the hope that everything was caused by all the falls and it was a neurological disorder that the neck and spinal surgery was supposed to fix.

It was…in fact…completely opposite, throughout his recovery, as the weeks went by, he continued to decline. Some of the weeks were worse than others and he never regained the use of either hand and lost the ability to stand or walk unassisted. Adding to this was losing the ability to speak very clearly. He could no longer hold his wife’s hand or pickup his 5 year old daughter and whisper sweet nothings in her ears.

His doctors, stating that everybody’s recovery is different and continued to do MRIs, each showing an improvement in spinal cord signal flow but he was not getting any better. Finally fed up with these doctors, in September 2023, he went for a second opinion from a neurological team in another state which is about 3 hours from his house. On that first visit they immediately admitted him into the hospital and after several tests he was diagnosed with ALS. This was such devastating news. EVERYTHING up to this point was believing this was a neurological condition caused by a series of falls and that he would get 100% better. Now being told you have a disease, and its terminal is most devastating news in every possible way …all of us are still wrapping our heads around it.

He is now completely wheelchair bound and cannot use his hands, cannot stand, cannot talk and this means he cannot feed himself or go to the bathroom unassisted, cannot bath himself or get in and out of bed unassisted. My brother was always such a strong and capable man, practically able to do just about anything. He has had his hopes, dreams, and life snatched away and something a father never wants to think about…his 5 year old not remembering him.

That was such a sad and terrible sentence to write, I NEVER thought I would be writing anything like this!

Jarett has always worked so hard to provide for his family as the sole breadwinner but now his income has been drastically reduced as he is receiving disability income, but it is not enough to cover their mounting needs. He and his family could use your help in these final months. They will need financial assistance in acquiring the necessary medical equipment used for ALS, like a van that can transport him and his wheelchair, a device to help him communicate and convey his needs, help with funeral and burial expenses (no one plans for this so young when you’re doing everything you can to raise a family) and to help with the normal costs of living to ensure his wife can still care for him and he does not have to worry about what will happen to them in his final moments.

From the bottom of my heart, I ask you for your generous gift of support to help my brother and his family deal with this devastating disease. If you are willing and able, I ask you to please share this link with friends and family and if possible, donate…any amount helps.

Thank you for your support and bless each and every one of you!