HOUSTON (CBSDFW.COM) – Texas mother Hannah Lowe is on a mission to raise $2 million for research into a rare form of muscular dystrophy that her youngest son, a tow-headed boy named Austin with big, beautiful eyes suffers from called L-CMD.
On Tuesday, she hit a major milestone in her quest, crossing the $500,000 mark.
Austin Lowe is 1.5 years old and has a fatal, muscle-wasting disease called LMNA-related congenital muscular dystrophy (L-CMD). (courtesy: L-CMD Research Foundation/ Hannah Lowe)
Austin, who is “mentally sharp, happy and resilient,” has found ways to adapt despite the muscle-wasting disease robbing the 1.5 year old of the ability to hold up his head, eat by mouth, sit up or crawl. He loves music, dancing, stacking light blocks and any toy that makes a noise with buttons.
L-CMD is fatal. Statistically children with the disease live less than 18 years and succumb to respiratory insufficiency or heart issues.
She has started the L-CMD Research Foundation to fund the work of researchers and scientists who will develop treatments and a cure for L-CMD.
“Given that Austin is on the severe end of the spectrum, we cannot wait for the science to reach us; we must go seeking the innovative, most promising scientific technologies,” said Lowe.
The most pressing project, which could literally save Austin from childhood death, is the development of a gene therapy. The effectiveness of gene therapy decreases as children grow and as the disease progresses; thus time is running out, according to Lowe.
“We know that the sooner kids with degenerative diseases receive gene therapy, the better the outcomes. The implications of this science could change the world, and we stand poised at the tipping point of making these treatments and cures a reality for many,” she said.