Grandmother on a Mission

By: Eugenia Jones

Grandmother of child stricken by SMA fights to raise awareness for those affected by the disease

Lana King describes herself as a “ma-maw on a mission.”  After her fifteen month old grandson, Camden Reid King, was diagnosed last month with spinal muscular atrophy (SMA), Lana began a personal crusade, not only to help her own grandson, but to help spread awareness about a disease that is the number one genetic cause of death for infants.  One in ten thousand babies is diagnosed with SMA, and one in every fifty Americans is a genetic carrier.  There are four types of SMA based on age of onset and the highest physical target achieved by the affected individual.  With SMA falling into t

he same class of diseases as ALS (Lou Gehrig’s Disease), those affected by SMA have difficulty with basic physical functions such as walking, breathing, and swallowing.  Usually the later the diagnosis of SMA, the less debilitating and life threatening the disease is.

Due to the expense of testing, testing is usually performed only if a baby shows symptoms of the disease.  DNA testing is required to determine if an individual is a carrier of SMA.

Although Camden, who is the son of Brook Privett and Coty King, has not been “typed” yet, further testing scheduled  for November 4 at the Cincinnati Children’s Hospital should determine his specific type of SMA.  According to materials Lana has researched in her quest for information about the disease, Camden seems most likely to be diagnosed as Type 2 SMA.

“Camden can sit up, feed himself, and has some use of his hands,” Lana explained.  “Unless there is a cure or treatment breakthrough, he will never walk normally but may be able to walk to some degree with assistance.  I’ve noticed that he watches others as they move around.  It’s almost like he wonders what people are doing when they walk.”

According to Camden’s grandmother, he is a very happy baby although he seems to tire easily.  “Caring for him doesn’t require a lot extra-we just have to be his legs.  Hopefully, he will be fitted for a wheelchair later.”

Camden receives physical therapy at home in order to slow down the progression of the disease.  Therapists work to strengthen Camden’s muscles and to keep current muscle function from disappearing.   Only time can tell how quickly the disease may progress.

“He loves music and his I pad,” Lana exclaimed.  “He works it better than I can!”

Since it is a genetic disease and there is no knowledge of SMA on either side of the family, Camden’s SMA diagnosis came as a total shock.

“At first, I asked why, why, why,” Lana said with tears filling her eyes.  “But I always remember that it’s in God’s hands.  God gave Camden to us for a reason.  I know SMA is a progressive disease, and unless there is a cure or a treatment developed, Camden may lose the abilities he has now as his condition worsens.  But who knows?  The help from our community might be just enough to push us over the edge to finding a cure.  I’m a ma-maw on a mission.  If I can’t save my grandson, I might save someone else’s.”

Lana eloquently described the impact of the disease on the family.

“It is tragic for family to watch their child and not be able to do anything,” she said emotionally.  “As a parent or grandparent, you feel it is your job to protect your child.  It is an awful feeling to be in a situation where it seems like there is nothing you can do to help.  There is power in numbers though, and there is power in faith.  Researchers have made a lot of progress in learning about this disease.  Together, with faith, I think we are close to finding a cure.”

Lana’s determination to support researchers in search of a cure for the disease combined with Camden’s natural love of music led to her idea of “Jam for Cam.”  The “Jam for Cam” event is currently being organized and is scheduled for May 9, 2015.  Lana explained the event will feature all types of music-from gospel to rock- and all proceeds will go to benefit SMA research.

A benefit to help the family with expenses is scheduled on November 14, 2014 beginning at 5:00 p.m. at the Senior Citizen Building.  Gospel music, a silent auction, and soup/sandwich meal will highlight the benefit.