Huge Family Challenges Due to Father's Chronic Health Issue

My little brother, Leo, was born with a chronic disorder known as Cerebral Palsy (CP) after what I learned later was a fortunate blessing for our mother and Leo to have survived such a traumatic ordeal. It was pretty scary from what our mother told us.

It was a lot different in the 1960’s/1970’s so I know Leo did everything he could possibly do to hide the fact up into our early 50’s that there is/was anything “different” about him. Without having to say too much, he has been through a lot when we were young and grew up very closely since his birth in 1966.

I do not think I really knew the extent of the huge stroke he had until a recent MRI showing large deep scars inside his brain, causing his CP. He had the stroke none of us knew about until almost two weeks ago. It was touch-and-go when Leo was in the birth canal for over 24 hours and on his way to being my only little brother that awesome July day almost 60 years ago. 

I would have never imagined I would witness my brother back in the same or worse physical condition struggling 59 years to the day Leo was brought into our family. From about age 4 to 16, I stood up for him defending him from the cruelest of neighborhood bullies. 

They nicknamed him “drunk” because of his gait and lack of motor control when he was about 4 or younger, plus those mean kids threw rocks at, beat him up daily, and even shot him at age 9 as he rode his bike in our neighborhood in NY. His doctors told Leo and our mother he would “never ride a bike, catch a ball, and so much more (because of his CP) when Leo proved ALL his amazed physical therapists and neurologists all wrong by accomplishing all of those sports and physical activities. I believe his CP made Leo and even me better from it all; probably everyone in our life. 

As of today and after the pandemic 4 years ago, he started getting sick again and a crazy number of neurologists later, Leo’s almost back at “square one” with the not the best CNS coupled with specialists who have not been able to identify what he has as it has progressed thanks to COVID, which medical studies/journals say SARS-CoV-2 infection attacks the weakest part of any person’s body and happens to be Leo's Central Nervous System. 

Leo had the SARS-CoV-2 infection twice in July ‘21 (7.20.21 to 11.30.22: includes Long Covid and he’s had it from 8.22.24 to present) and a significant bout with SARS-CoV-2 in March and April 2025.

Consider this from the [National Library of Medicine - National Center for Biotechnology Information, Feb 13, 2022 and published: “The most common symptoms of SARS-CoV-2 infection in children are fever, cough, and pharyngitis (Mania et al., 2021). The severe course of COVID-19 infection in children (4–5%) (Cui et al., 2021) mainly affects patients with his “chronic neurological disorder” (Gallo et al., 2021), especially cardiovascular, respiratory, and neurologic disorders (Tsabouri et al., 2021). 

Typically in the course of the disease (they go back and forth about whether to call it a disease, condition, and/or disorder), degeneration occurs within the spinal-cerebellar tracts, posterior cords of the spinal cord, and the pyramidal pathways and cerebellum. It is not something that will disappear.

The most common symptoms are ataxia and dysarthria. Limb weakness progresses, resulting in paresis and, subsequently, paralysis. Approximately 90% of the patients develop cardiomyopathy (most often hypertrophic). The causal treatment is unknown (Pandolfo, 2008).

Now, Leo has been diagnosed with the same chronic neurological disorder he was born with defined as Ataxic Cerebral Palsy and we thought he beat it, as he typically does. There is not too much that keeps him down and out of this kind of a fight.

Of note: [Ataxic Cerebral Palsy (CP) is caused by damage to the cerebellum, the brain's balance center. This damage can lead to a variety of secondary symptoms, including vision and hearing problems.]

But with bigger issues because he took on a bigger client load earning him more accomplishments/trust while he gave back to the community by leading and helping thousands of people excel beyond their potential and making a difference for his clients (his company’s clients have been managed by up to six consultants until the pandemic) and those who were exceptional but also “misfits” like Leo.

Leo’s about to lose his family’s home/sanctuary because he hasn’t been able to work full time (FT) with his disability for about 4 years now to make a good living to support himself/his family anymore. 

We know what it’s like to work hard growing up on farms. Leo started working FT at age 13; was forced to stop working FT in 2022. Then, he was diagnosed as “dizzy”, but following over 5 MRI’s at 8 healthcare systems, plus over 90 specialist visits in 7 states and 2 countries since ‘22. 

Leo needs a break to collect his wits, but he must pay his bills, as we all do. 

Here’s how you can help:

* Donate: Any amount directly supports housing, healthcare, and daily needs during this crisis.

* Share: Spreading his story increases the chances of reaching those who can help.

* Offer Guidance: If you have experience with disability services, financial aid, or housing support, your advice would mean a lot.

We deeply appreciate any support you can give; his family’s well-being depends on it.

Dean Lance Maxson