Support Liam's Fight Against SPATA5L1

Hello my name is Cheyenne and I have a wonderful little boy named Liam who just turned 1 years old on June 14th.

Liam has been diagnosed with a disorder called SPATA5L1. He is one of sixty kids in the entire world that have been diagnosed with this disorder and as of now there is no cure. Due to this disorder Liam has profound bilateral sensorineural hearing loss, small optic nerves, Cortical visual impairment, epileptic seizures, three different movement disorders (myoclonis, dystonia, chorea), cerebral atrophy, high/low muscle tone, G-tube fed, cerebral palsy, and globally delayed.

It’s still too early to tell if he will have any of the other signs of SPATA5L1. SPATA5L1 can also cause autism and intellectual disability. There’s not much known about SPATA5L1 or how to treat it. But we’re going to do everything in our power for Liam to have the best life possible.

The costs me and my family face for his treatment are terrifying. However the only other option would be to give up and that is unacceptable. Liam is set to be getting his cochlear implant surgery in June to hopefully help him be able to hear. He is also going to need lots of occupational, physical, vision and speech therapy on top of all of his doctors appointments. We are looking into a DMI therapy that you have to pay out of pocket for that Liam could benefit from.

If you would like to help, you can donate below, and we are so grateful for anything you are able to give. No donation is too big or small. You can also help make a difference by sharing our story, and help raise awareness for Liam’s fight with this disorder. Thank you so much for your time.