By Michelle Colesanti
Shawn and Jayson Santos waited a long time for their only child, Brooklynn Rae Santos. When Brooklynn was just a baby, her parents noticed that something was amiss. She was not sitting up or moving around as she should have been. A pediatric neurologist confirmed their fears as she was diagnosed just before her first birthday with Type II Spinal Muscular Atrophy (SMA).
Brooklynn, now 5, has just begun Kindergarten at Robinson Elementary School in Plant City. Despite having to be in a wheelchair due to very weak muscles, she has been mainstreamed into a regular classroom.
SMA is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. One in 6,000 children is born annually with SMA. One in 40 people are carriers and when two parents are both carriers, the chances are one in four of passing this mutated gene on to their children. For children with SMA Type II, the prognosis for life expectancy or for independent standing or walking roughly correlates with how old they are when they first begin to experience symptoms – older children tend to have less severe symptoms. Life expectancy is reduced but some individuals live into adolescence or young adulthood.
“Bands for Brooklynn”, a family fundraiser will take place on Saturday, September 7 at Christ Community Church from 5-10 p.m. to help the family with their medical expenses. “Brooklynn was introduced to the members of the Noise Box at Christ Community Church and they fell in love with her and wanted to help,” commented Brooklynn’s mom, Shawn.
Dad Jayson is the sole provider for the family, and they are not eligible for social security or Medicare. Their medical expenses are adding up and when members of The Noise Box, a not-for-profit local organization featuring local bands, found out about the family’s situation, they came forward to help and create this event to benefit Brooklynn’s medical fund.
Tickets cost $4 in advance and $6 at the door. Donations are being accepted for raffles and baked goods. Hot dogs and drinks will be for sale during the event. They are looking for sponsors and donations for raffles from local businesses. A minimum donation of $10 will earn your company logo to be printed in the events brochure. All donations and sponsorships are tax deductible.
Christ Community Church is located at 1310 John Moore Rd., in Brandon. For more information, call or text Shawn at 495-1045 or Jayson at 784-2657, or visit the Facebook page, Bands for Brooklynn.
