Hello friends, family and community my name is Leonardo River Benz and I was born on April 20, 2021 at University Hospital in Geauga County Ohio.  Seven days after my birth my parents, Pablo (Cleveland union tradesman) and Lauren (co-owner of the White Flower Cake Shoppe) Benz were given the news that my blood tests were positive for type 1 spinal muscular atrophy (SMA).
SMA is a rare neurodegenerative disease that effects the motor nerve cells in the spinal cord and impacts the muscles used for activities such as breathing, eating, crawling and walking. It effects 1 in 10,000 people worldwide and is the number one genetic cause of death in infants.

The guidance given by an incredible team of doctors at University Hospitals Rainbow Babies & Children Hospital helped us decide that the gene therapy medicine ZOLGENSMA was our best option going forward and could give me a wonderful chance at living the best life possible with such a challenging condition.

I know my gene therapy treatment won’t cure me of SMA and my parents are completely aware of that, but with family, friends and community support I’ll be given a great opportunity to live with this condition and meet as many milestones as  possible.

A separate bank account has been opened up by my parents to begin setting funds aside for the financial responsibility that comes with my condition.  There are many unknown hurdles ahead and we are taking this therapy and it’s path one day at a time but staying positive and planning for it is key.

If there’s any interest on how to learn more about this diagnosis and the lives it impacts, please visit CURE SMA  and the gene therapy site 
ZOLGENSMA 


It is with the kindest heart that I thank you for reading and educating yourself about SMA and I am incredibly grateful for your time and help.



A little house keeping :

I am organizing this fundraiser to help cover Leo’s  medical costs as best as possible.  I consider Lauren, Pablo, and Leo family.  We have been friends for a very long time and business partners for about 15 years. 

The money you generously given will be used for Doctors visits, on going physical therapy, treatments, care, and medical supplies.

All the funds raised will be deposited directly into an account that Lauren Leo’s Mom) has set up specifically for Leo’s medical expenses.

Saying thank you  doesn’t seem enough. It is difficult to describe how much your act of kindness  will help Leo and what it means to me.

Thank you,
Matt