Bella & Eli SMA Awareness

Bella & Eli SMA Awareness This page was made to raise awareness of a rare genetic disorder that most people have never heard of The word atrophy is a medical term that means smaller.

Spinal muscular atrophy (SMA) is a genetic (inherited) neuromuscular disease that causes muscles to become weak and waste away. People with SMA lose a specific type of nerve cell in the spinal cord (called motor neurons) that control muscle movement. Without these motor neurons, muscles don’t receive nerve signals that make muscles move. With SMA, certain muscles become smaller and weaker due to lack of use. Bella was diagnosed with SMA Type 1 at a few days old. She is alive because of a medical miracle called Zolgensma. Zolgensma, is a gene therapy medication used to treat spinal muscular atrophy. It is used as a one-time infusion into a vein. Zolgensma works by providing a new copy of the gene that makes the human SMN protein. Zolgensma cost 2.1 million dollars. Without Zolgensma Bella’s life expectancy was less than 2 years. Bella needs physical as well as other therapies to help her get stronger. Bella also needs adaptive and medical equipment to help her. Bella is on two medications that insurance does not cover, we pay out of pocket for those. Fundraisers were made for anyone who would like to help with medical cost. Any amount is greatly appreciated. https://gofund.me/0b00f865

https://fundly.com/m2/fight-for-bella/supporters

Here is Bella’s Amazon wish list for the generous people who ask me what Bella needs or wants. https://www.amazon.com/hz/wishlist/ls/2AMLYLPJHPO1T?ref_=wl_share


Our hope is she will have a long, healthy, and happy life. We pray she will be able to do what most kids can like sit up, walk, run, play with other kids, and so much more that we take for granted.

Eli doesnt know if he likes frosting, but he's a happy 2 year old today.
10/09/2025

Eli doesnt know if he likes frosting, but he's a happy 2 year old today.

09/05/2025

Got discharged yesterday, doing good.

09/03/2025
09/03/2025

Getting admitted, she has a large ball of stool that will not come out.

09/02/2025

Bella is going to hospital for no bowel movements

08/23/2025
Elis got some wheels
08/23/2025

Elis got some wheels

Bella loves to take selfies with my phone, and Eli is just happy to be here.
08/21/2025

Bella loves to take selfies with my phone, and Eli is just happy to be here.

Address

Lockport, NY

Website

Alerts

Be the first to know and let us send you an email when Bella & Eli SMA Awareness posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram

Category