Austin was born on Aug 27, 2019 and as far as we knew he was a typical little baby. Cranky, not a good eater, but all things that we were told he would outgrow.

Unfortunately, when he was 5 months old, he was admitted to Texas Children’s Hospital for failure to thrive - not gaining enough weight. There they placed a feeding tube directly into his stomach to ensure his nutrition, and they ran genetic testing.

What they found was earth shattering.

Austin has LMNA-related congenital muscular dystrophy or L-CMD, caused by a randomly occurring DNA mutation.

There is no treatment and no cure. With so few cases, we don’t even know how long he can or will live.

Already, Austin cannot sit up, crawl, stand or walk. As his muscles grow weaker, so too will his heart, and this is what will ultimately kill him.

Home from the hospital, we immediately jumped into a new routine of life, with all the extra “stuff,” while also grieving our son and the life we had anticipated as a family with Austin and his older brother Ean.

We have found hope, however. In speaking with scientists and experts around the world, we’ve seen that we can be a driving force for change for this rare disease. We’ve formed this 501c3 nonprofit to urgently translate scientific research into useable treatments - and ultimately a cure - for L-CMD.

We ask for your help today. Help us fund this research with a tax-deductible donation. Help us spread this story. Help give children with L-CMD a stronger future. Thank you.