Asher Lennon Lion's SMA Journey

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Asher Lennon Lion's SMA Journey

Asher Lennon Lion's ("our lion") journey with Spinal Muscular Atrophy (SMA). Our beautiful boy. He was born perfect. He is perfect. Guess how old Asher is now??

But within him, he is one gene from perfect. Because of this imperfection we were told he wasn't going to live beyond two years. He is alive because of a medical miracle. A miracle that takes long years, lots of funding and so many hearts who are invested in research and hope. Hope is in Asher's genes thanks to countless people who made this journey possible. Asher was diagnosed with Type 1 SMA (Spinal Muscular Atrophy) at six months old. SMA is a debilitating, genetic neuromuscular disease, affecting babies and children much like Lou Gehrig’s Disease or ALS. This devastating disease destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, swallowing, and even breathing. Asher is treated with , an experimental drug by Ionis Pharmaceuticals, Inc. (now FDA approved called by Biogen). The drug is administered intrathecally. Asher has been receiving the drug since seven months old. Learn more about SMA and funding for research at curesma.org.

09/10/2025

Asher has worked hard his whole life. Even now through a season of regression and loss following his leg break last year, he is still fighting. He hasn’t qualified for another clinical trial since Spinraza in 2013. He is awaiting new drugs coming down the pipeline, but in the meantime his body needs more help. So we are trying to find ways to give him more naturally with new stem cell activation technology. Hoping to see more gains again soon!

09/08/2025

Here we go again. Years ago we unlocked muscle juice (aka Spinraza) to help keep motor neurons alive. Now we are tapping into human peptide GHK. New cell activation technology is paving the way for health promoting effects. The best news, we don’t have to travel the world to find this technology or pay outrageous money to use it. Join us on our journey friends, it’s gonna be great!

09/07/2025

Happy Grandparents’ Day to the Papas, Grammys, Loveys, PopPops, YaYas and more.
📸

08/28/2025

Definitely not feeling as vibrant as this photo’s colors after a hard day at muscle clinic. Lots of ups and downs between all the specialties…Genetics, Nutrition, Physical Therapy, Orthopedic, Respiratory, Endocrinology, Neurology.

More to come. In the meantime, we are gonna keep advocating!

08/27/2025

by Genentech: Our journey is as wild as hanging out with a conspiracy of lemurs in Kansas. It's always an adventure for the whole family! In honor of , head on over to to learn more about our journey.

Intended for US Audiences.

08/10/2025

Every year during SMA Awareness Month, the second Saturday in August is dedicated to lighting a candle to remember those who are not with us anymore and to honor individuals, friends and families who are affected by Spinal Muscular Atrophy (SMA).

Light a candle to support the SMA community. Share your photos with us from wherever you are!

🕯 🕯 🕯 🕯 🕯🕯🕯

I went to light a candle
But one flame would not do
For all the pain and heartache
We all have been through

I went to light two more candles
To represent hope, faith and love
But three didn’t seem enough
For those who watch from above

I couldn’t light as many candles
As I wish I could have lit for you
Because the flames would spread like wildfire
And wouldn’t do what they were intended to

So I lit one candle with many stones
Each stone for a precious heart
With a prayer that SMA will end
And pain, tears and death will part.

-Amanda Linda

🕯🕯🕯🕯🕯🕯🕯🕯

*******
Asher was diagnosed with Type 1 SMA (Spinal Muscular Atrophy) at six months old. SMA is a debilitating, genetic neuromuscular disease, affecting babies and children much like Lou Gehrig’s Disease or ALS. This devastating disease destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, swallowing, and even breathing.

Asher is treated with , an experimental drug by Ionis Pharmaceuticals, Inc. (now FDA approved called by Biogen). The drug is administered intrathecally. Asher has been receiving the drug since seven months old.

Learn more about SMA and funding for research at curesma.org.

08/09/2025

This moment captured in a photo is more than a piggyback wheelchair ride. It’s a picture of hope for the future.

On one hand our oldest daughter is looking to the future. Exploring colleges and universities. She just happens to have the special privilege of getting a “taxi ride,” as her little brother calls it, to tour campuses.

It’s a surreal moment. Although as a parent we can imagine preparing ourselves for the possibility of a child attending undergraduate school, I don’t think the first experience seems real. I mean, how did we get here so fast?

Yet, this exact moment, is an unbelievably special moment because it was thought to never become real. There was a time when we were told Asher would not live past two years old. In that reality, he would never live to see his oldest sister attend a university. He wouldn’t be around to tour campuses with her and he most certainly wouldn’t have taxied her around.

Yet here he is.

He is here because the reality is Adrian Krainer, PhD, founded the first lifesaving drug for Spinal Muscular Atrophy ( ) at . Now, there are three FDA approved treatments available.

And here she is.

So on this big, bright, beautiful day of looking to the future our worlds collide - our daughter’s academic exploration into the sciences and our son’s hope for a future because of science.

Science is cool. Check out a cool science video in the comments. (Credit to .)

*******
Asher was diagnosed with Type 1 SMA (Spinal Muscular Atrophy) at six months old. SMA is a debilitating, genetic neuromuscular disease, affecting babies and children much like Lou Gehrig’s Disease or ALS. This devastating disease destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, swallowing, and even breathing.

Asher has been treated intrathecally with , an experimental drug by Ionis Pharmaceuticals, Inc. (now FDA approved called manufactured and commercialized by Biogen) since seven months old.

Learn more about SMA and funding for research at curesma.org.

07/27/2025

Today marks the 35th anniversary of the Americans with Disabilities Act (ADA), a landmark moment in the fight to protect the rights of people with disabilities.

On this historical day, we’d like to join to Roll and Triumph Foundation to advocate for ADA compliance and accessibility for our disability community.

In California, disabled persons may park in two adjacent non disabled parking spaces if there is no accessible parking space available that is wide enough. This is allowed to provide enough room to exit and maneuver once outside of their vehicle. The disabled placard must be displayed if disabled vehicle plates are not on the vehicle.

BILL NUMBER: AB 463, SECTION 1. Section 22511.85 of the Vehicle Code

During powerchair soccer practice at the City of Oceanside Parks and Recreation our vehicle received a parking ticket because it was parked across two regular parking spaces. No accessible parking space was available and our disabled placard was visible. Sadly, we did not appeal the ticket in time and lost the opportunity to advocate and educate the Oceanside Police Department. We hope to honor the ADA by sharing our story and encouraging local authorities to revisit their parking enforcement procedures to ensure they are ADA compliant, similar to how the San Diego Police Department has covered in former memos regarding Assembly Bill 463.

05/30/2025

Governor Newsom is proposing budget cuts that threaten families who rely on In-Home Supportive Services (IHSS), a life-changing Health & Human Services program in California.

“The proposal is to reduce the total hours an individual provider can work but not to reduce the individual hours the authorized recipient is authorized to receive. So it may result in receiving those services from a different mix of providers in order to honor the cap of overtime for a specific provider.”

This proposal directly conflicts with state audit findings in 2021. The audit letter declared that deficiencies in the IHSS program, such as limited caregivers, already contribute to the number of recipients who do not receive the services for which they qualify. The number of recipients who lack care will continue to increase with proposals in the May Revision 2025-26.

The 2021 audit letter also summarized, “Caregivers throughout the State receive pay that is at or near minimum wage, and caregivers earn significantly less than a living wage in each county.”

It doesn’t take a mathematician to assess that current IHSS overtime helps make pay more equitable. The reality is most caregivers at the base wage could make more per hour working at Starbucks. Care providers who step into the role to clean up bodily fluids over making lattes aren’t doing it for the money. They become care providers because IHSS provides a manageable way to survive life while caring for a loved one with complex medical needs. Many family units rely on IHSS overtime to help afford housing, food and medical expenses for a medically complex family member at home.

The full audit reported that, “More than 45 percent of recipients enter the IHSS program because they qualify for a nursing home level of care. Long-term care expenses average from about $39,000 to $170,000 annually, depending on the level of care needed, compared to average IHSS expenses of about $17,000 per year. As a result, the IHSS program saves the State between $22,000 and $153,000 annually for every recipient who would otherwise have transitioned to long-term care provided through Medi-Cal.”

The bottom line: IHSS saves overall even with maxed overtime pay. Let the care providers who are primarily in-home family/parent providers keep their overtime because they are the ones who are saving California by working tirelessly to care for disabled and elderly loved ones.

Sources for 2021 state audit:

https://information.auditor.ca.gov/reports/2020-109/index.html

https://information.auditor.ca.gov/pdfs/reports/2020-109.pdf

05/29/2025

In-Home Supportive Services (IHSS), a life-changing Health & Human Services program in California is under attack.

“The proposal is to reduce the total hours an individual provider can work but not to reduce the individual hours the authorized recipient is authorized to receive. So it may result in receiving those services from a different mix of providers in order to honor the cap of overtime for a specific provider.”

I wish for a moment we can enter into the hearts and minds of our most vulnerable when we want to make radical decisions that directly impact them.

Decision makers do you know what it’s like to need help with all daily living activities?

Do you know what it’s like to need help to eat?

Do you know what it’s like to need help to breathe?

Do you know what it’s like to need help to bathe?

Do you know what it’s like to need help to urinate or have a bowel movement?

Now imagine the vulnerability in all of those moments of need.

Now imagine that vulnerability with a stranger.

Now imagine that vulnerability with three to five to 10 or more strangers (or so called “different mix of providers”).

But iykyk there is a deficit of providers. The proposal is an imaginary mix of providers (THEY DO NOT EXIST). So the proposal to take away hours from reliable, familiar, live-in/parent providers is actually abuse on our most vulnerable.

Instead of trying to honor the cap of overtime for a specific provider, let’s honor our most vulnerable and think and act and fight for human decency.

Assemblyman Jeff Gonzalez
Assemblymember James C. Ramos
Assemblymember Dawn Addis
Assemblymember Mia Bonta
Assemblymember Pilar Schiavo
Speaker Robert Rivas
Senator Akilah Weber, MD
Senator María Elena Durazo
Senator Shannon Grove
Caroline Menjivar
Bob Archuleta
Sabrina Cervantes
Robert Rivas
Senator Nancy Skinner

05/27/2025

This weekend Asher experienced his first college graduation at the University of San Diego. It’s one thing to tell Asher about mom’s graduation at Florida Southern College back in the day, but it’s quite another thing to experience in person the buzz of bright futures and the fresh air of inspirations. And this graduation had something a little extra special. This graduation had Jimmy.

Jimmy is near and dear to our hearts. He is a young man who has Duchenne Muscular Dystrophy and was Jeremy’s client for two years. There is so much we could say about Jeremy’s job with Jimmy but for now let’s just say it was the best.

Jimmy was also a glimpse into Asher’s future. What it would be like for Asher to juggle the college experience while also finding proper care to help manage his disease. Through Jimmy, Asher could see what it looked like to not let his disease define him or hinder him from achieving what he wants.

So this weekend not only did Asher learn the difference between summa, magna, and cm laude, but he also learned that the word aspiration as he has grown to know as a struggle and sometimes death sentence for people living with SMA, is also the word for hope and ambition to achieve.

Asher wants to be summa cm laude, “with highest honors,” the best of the best. How’s that for aspiration?

05/11/2025

Happy Mother’s Day to the mamas who carry through all the years, and to those who have hands empty through the years.

Circa 2016 📸 Christi allen Curtis Photography

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Wildomar, CA

Telephone

8634305199

Website

http://instagram.com/asherlennonlion

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Susan Watkins, MFT
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