Asher Lennon Lion's SMA Journey

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.







Awesome theatre.Awesome seats.Awesome merch.Awesome chance to meet Let’s go!
03/21/2026

Awesome theatre.
Awesome seats.
Awesome merch.
Awesome chance to meet
Let’s go!

🎶 Can’t Steal My Joy🎵Losing out on a local accessible van turned into getting a not-so-local accessible van across the c...
03/21/2026

🎶 Can’t Steal My Joy🎵

Losing out on a local accessible van turned into getting a not-so-local accessible van across the country in Georgia.

We could have paid to ship the van. But what happens when you find out you can pickup the van in the same city is performing (Asher’s favorite artist)? You turn a boring expense into a quick fun trip, right?!

In the face of adversity we turned to the spirit of adventure.

Tonight will be epic. Happy birthday Asher!!!

A dream came true.Until the dream melted like snow.Before we kicked off our epic adaptive ski event yesterday we receive...
03/07/2026

A dream came true.
Until the dream melted like snow.

Before we kicked off our epic adaptive ski event yesterday we received amazing news from Morrie's Mobility Finance.

We got approved for our first accessible vehicle!!!
The terms were good.
We could manage the payment.
It was finally happening.

We had found the perfect van at Wheelchair Vans Inc (aka 949vans) on Tuesday. All week we corresponded with Sam and he confirmed they could make the additional seat modifications we needed immediately and add a custom bench seat after purchase to help keep our finance cost down. It was a win.

For us, an accessible vehicle doesn’t just mean independence and freedom for Asher, it also means safety. We can barely lift him into our van anymore. And “we” really means only dad because mom has had an injured hip.

We were so excited we told the kids the news before heading out to ski. Why not put the icing on the cake and make it a super epic day. Right?!

But then just as we watched snow melt off snowboards our dream van melted away with one phone call. 949vans called to inform us they sold the van. The van that as of the day before was in the works to be ours. Plainly Sam explained the paperwork and down payment wasn’t in place when someone else came in and purchased it.

So, despite everything —
The visit to the dealership.
All the calls.
All the texts.
The literal approval.

It was just a transaction.
It was just paperwork.
It was just money.

We get it. It’s a business.
But to us it was so much more.
Our hearts were in the dream of that van.

We didn’t have the privilege of being upset at the ski event. We had to tough through it. So we smiled, swallowed the pang of heartbreak, and kept on making epic memories.

We are trusting and believing another prefect van is out there for us but we definitely won’t find it at 949vans.

And He’s GoneThere are moments in my life that make me wonder what kind of parent am I?This was one of those moments.Wha...
03/06/2026

And He’s Gone

There are moments in my life that make me wonder what kind of parent am I?

This was one of those moments.

What kind of parent bundles up a disabled child in the tundra and hands him over to complete strangers to take him on a wild ride down a mountain?

I guess this kind of parent.

Asher disappeared into the white abyss. No sign of Asher in sight until he bolts down a slope in adaptive ski gear. His beautiful eyes covered by goggles. Will they be filled with excitement and wonder or be petrified in fear? His mouth will be covered. I won’t know if his infectious smile is beaming or his jaw is clenched in fright. His bright yellow jacket will be the only thing signaling he’s on his way back to me.

Can’t wait to see that bright yellow jacket because I didn’t realize letting go of my boy so he could spread his snow-riding-wings would be so hard.

Didn’t realize it is so hard to be the kind of parent that lets him go to let him live.



“Oh, the places you’ll go,” has been an inspirational phrase since Asher was little to remind us to think beyond limitat...
03/02/2026

“Oh, the places you’ll go,” has been an inspirational phrase since Asher was little to remind us to think beyond limitations and focus on where we want to go.

So, on Dr. Seuss’s birthday and in honor of Asher’s birthday this month be reminded…

“You’re off to Great Places!
Today is your day!
Your mountain is waiting,
So... get on your way!”

Today is National Caregivers Day - a day to recognize and honor professional caregivers and family members, friends, or ...
02/21/2026

Today is National Caregivers Day - a day to recognize and honor professional caregivers and family members, friends, or neighbors who provide care.

THANK YOU CAREGIVERS!!!

Hoping this is the beginning of a beautiful thing 🙏🏼
02/17/2026

Hoping this is the beginning of a beautiful thing 🙏🏼

We love someone rare today and everyday 🫶🏼Much love to all 💕
02/15/2026

We love someone rare today and everyday 🫶🏼

Much love to all 💕

12/02/2025

We stopped fundraising a long time ago because we just weren’t good at it. We never raised a lot of money or even reached our goals. Maybe we didn’t try hard enough. Maybe we didn’t know the right people. Maybe we didn’t have a big network. Whatever the reason it doesn’t mean we stopped seeing needs everywhere.

We see the need for medical expenses. We see the need for research and development. We see the need for adaptive equipment. We see all the needs.

For some reason, the need that goes unmet and bothers us the most is when there is a need for an accessible van. Families can’t seem to ever fundraise enough money independently and there aren’t enough programs and foundations that help fill the need.

So, as you consider giving on this , if you know someone in need of an accessible van, help the family. We realize there are tax benefits to non-profits, but still consider meeting a personal need of your neighbor.

Love,
Us-another family still lifting their child into their van.

We hope everyone is as excited for Christmas as Asher!!!Thankful 🍂 Merry 🎄Happy 🥳
12/01/2025

We hope everyone is as excited for Christmas as Asher!!!

Thankful 🍂 Merry 🎄Happy 🥳

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Wildomar, CA

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8634305199

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