Devon Lovelace says each day she spends with her 20-month old son, Dakin, is a blessing.

The baby nearly died when he was 3 months old. Since that time, Lovelace and other family members and friends have watched almost helplessly as the infant has slowly lost muscular control, including the use of his hands and arms.

Dakin has a rare disease called spinal muscular atrophy with respiratory distress — often referred to in the medical community as SMARD, Lovelace said.

"Dakin is attached to a ventilator and will be wheelchair bound for the rest of his life," she said. For that she is grateful. The other option for many children with spinal muscular atrophy is death.

"He was born perfectly normal and was normal until he was 3 months old," Lovelace said. Suddenly, Dakin became sick and had difficulty breathing. He was taken to a local emergency room and then air-lifted to a Dallas medical center, she said.

"They determined he has this incredibly rare disease, SMARD," she said.

Because of the form of spinal muscular atrophy Dakin has, his prognosis is brighter than for babies who have the most common form of the disease.

"SMA is incurable, untreatable and is usually fatal by the time they're 2 years old," Lovelace said. Dakin's form of muscular disease means that although he will likely spend his life with a ventilation tube in his trachea and unable to walk or feed himself, at least he is expected to live, she said.

Karen Vazquez, a good friend of Lovelace's, said spinal muscular atrophy is little known among those not personally affected by it. She is attempting to help her friend drum up support for funding to help find a cure and treatment.

"We're encouraging everyone to take 30 seconds to log onto www.petitiontocureSMA.com to sign the petition," Vazquez said. "The more signatures we have from East Texas the more influence we can have on Congress."

She said Lovelace and other families affected by spinal muscular atrophy will be meeting with U.S. Rep. Louie Gohmert, R-Tyler, on Tuesday to encourage his support.

Passage of the act could free up funds already allocated to the National Institutes of Health to be used in research for spinal muscular atrophy, Lovelace said.

"It's a grass roots effort started by Bill and Victoria Strong of California in support of the SMA Treatment Acceleration Act," she said. The act initially was introduced in 2007 and was reintroduced in 2009.

Lovelace said passage of the act could provide insight into other disorders, including the muscular dystrophies, ALS/Lou Gehrig's disease, Friedriech's Ataxia, Fragile X syndrome and Huntington's disease among others.

Spinal muscular atrophy at a glance

What: Spinal muscular atrophy is a neuromuscular disease characterized by degeneration of motor neurons, and is incurable, untreatable and often fatal, usually striking infants. It is the No. 1 genetic killer of children younger than 2.

Physical impact: Progressive muscular atrophy (wasting away), weakness and, in the worst cases, the loss of the ability to swallow and breathe.

Mental impact: The mind remains unaffected while muscles waste away.

Scientifically speaking: Spinal muscular atrophy occurs when a vital gene is deleted or mutated, preventing the creation of a protein necessary for muscle strength. A second nearly identical gene, referred to as SMN2, is present in all SMA patients.

Source: www.fightmsa.org

Action plan

What: The Spinal Muscular Atrophy Treatment Acceleration Act

Help: Among more than 600 neurological disorders, spinal muscular atrophy has been singled out by the National Institutes of Health as being one of the diseases closest to treatment based on scientists' advanced genetic understanding of the disease;

Stem cell: No stem cell research is involved in the bill

Public support: East Texans wanting to show support are encouraged to sign an online petition at: www.petitiontocuresma.com;

For more information: On White Oak's Dakin Lovelace, check out the family's blog at www.ventsuperman.blogspot.com

Copyright 2009 Longview News-Journal. All rights reserved.