Who is Caleb?
Caleb Merriken is one of thousands of 4 ½ year-olds in the Chattahoochee Valley area. He loves to play with his Star Wars Legos and Power Rangers. He enjoys watching football on TV and playing Madden on the PS3 with his dad. Like many preschool age children, pepperoni pizza is his favorite food and his favorite movie is How to Train Your Dragon.
The only thing that makes Caleb any different from other children is that he has been thriving with Spinal Muscular Atrophy (SMA) for the last 2 ½ years.
What is SMA?
Haven’t heard of SMA? The Merriken family and their friends are on a mission to change that . . . and you can help.
SMA affects the nerves that control voluntary muscle movement. Approximately 2 babies each day born in the United States are later diagnosed SMA. The motor nerves that control the muscles for crawling, walking, head and neck control, swallowing, and breathing slowly die off and do not grow back.
There are four types (I, II, III, and IV) of SMA. Caleb has type II based on his level of motor function.
- 1 in 6,000 babies born is affected.
- 1 in 40 people is a genetic carrier
- SMA is the number one genetic killer of children under the age of two.
- Currently there is no treatment and no cure.
Caleb’s parents
“Anything better is gonna be great!”
-Kannan Merriken, Caleb's father
Lifelong Columbus resident Kari Merriken (Wood) and U.S. Army Ranger Kannan Merriken had Caleb in June 2008. Caleb met the usual newborn and toddler milestones up until March 2010 when he lost his ability to crawl and had difficulty eating. Testing began that same month and after hospitalizations and feeding tubes to ensure his nutrition, Caleb was diagnosed with SMA in June 2010.
Kari and Kannan have gone through the grieving process of Caleb’s diagnosis and have clearly come together as a finely tuned parental unit as they care for Caleb and try to educate others about SMA. They wish others would understand the progressive aspect of the disease. Children with SMA will progressively get worse, not better. Caleb is more than just a cutie-pa-tootie in a wheelchair; he and his family don’t desire sympathy instead they aspire for more compassion and understanding. If you ever see Kannan, Kari, and Caleb out-and-about around town, don’t stare, look away, or provide sympathetic glances. Instead, introduce yourself and ask about Caleb and how the research is coming along towards a cure for SMA.
Advice to parents of a child newly diagnosed with SMA
Contact the Families of Spinal Muscular Atrophy (FSMA)* to receive not only a care packet but a balance of hope with reality. The Merriken’s advise parents to understand and accept the grieving process of their child’s diagnosis and to not listen to all of the negativity. First and foremost, focus on what their child can do.
The goal of FSMA is to advance research. Medical research for a cure takes an incredible amount of funding and time.
Research. Support. Hope.
Saturday, March 16 is where you come in! The 3rd Annual SMA 5K Eat n’ Run has 3 goals:
– 500 participants
– $50,000 fundraising goal – 100% goes directly to FSMA for research.
– Fun
Everything you need to know about the 3rd Annual SMA 5K Eat n’ Run can be found on the website here
Can’t make it to the SMA 5K Eat n’ Run on March 16 but still wish to donate?
Make checks payable to Families of SMA and send to:
SMA 5K – Eat n’ Run
P.O. Box 268
Ellerslie, GA 31807
*Families of Spinal Muscular Atrophy Information
Website: www.fsma.org
Mailing Address:
925 Busse Road
Elk Grove Village, IL 60007
Phone: (800) 886-1762 (Toll Free – US and Canada only)
(847) 367-7620 (all other locations)
Fax: (847) 367-7623
Email: [email protected]
