Help Us Support the Livi Center
Mitochondrial Diseases are severe and rare and often affect the most vulnerable of our population – children. These diseases are often life-threatening and cause much pain and suffering.
There are two little girls who have lost their lives to a type of this disease that we would like to introduce:
Olivia Custer, age 4
The Livi Center is being named after Olivia “Livi” Custer from Beaufort, SC. She lost her life to Leigh’s Disease, a type of Mitochondrial Disease, on July 2, 2010, just days before her fifth birthday. Her family requested that pink be worn by attendees at her mass; she was even buried in a light pink casket. She was survived by both her parents, her grandparents and her sister.
Jessica Smith, age 3
Jessica was the daughter of Mr. and Mrs. John Wendell Smith. She was only three years old when she was lost to Alpers’ Disease, a type of Mito, in October 2011. Jessica struggled with this disease for her entire short life. She loved playing outside, clapping and dancing.
Please help us in raising money for little girls like Olivia and Jessica. We need to take action before this disease takes away more precious children from this earth.
Mitochondrial Diseases FAQ
What are we doing to help?
Each resort is raising money to help with this effort. Here are a few examples of what our resorts are doing:
Beach Colony Resort: Beach Colony is offering guests a free breakfast voucher for every minimum $5 donation they make. Each room can get up to two vouchers.
Beach Cove Resort: Beach Cove had registered guests enter for a chance to win a free two-night stay in a one-bedroom executive suite by purchasing a $5 raffle ticket. Proceeds from the raffle went towards the Livi Center. The drawing was held of July 13.
Forest Dunes Resort: Forest Dunes Resort is entering all donors at their resort into a drawing at the end of the summer for a $50 gift certificate to Forest Dunes.
Captain’s Quarters: All guests who check in to the resort are asked if they want to make a donation to the Livi Center. If the clerk forgets to ask, the guest will receive a free breakfast. All who make a donation of $1 or more get an icee from the Level 6 Entertainment Center.
Why is it so important to raise money for this center?
Imagine the nightmares the parents of these children must go through while they seek treatment. They must jump through hoops, travel extensively and spend a lot of time trying to get proper treatment, even when they do not have much time left together as a family. Currently, there is no cure for Mito and since it is hard to diagnose and treat, a center is needed to bring together all the experts and doctors in this area to further the research, diagnosis and treatment of this disease.
When should I donate?
You should donate now! We will be raising money until the end of August. The more money we raise, the more people like Jessica and Livi can be helped. Donations made through Vacation Myrtle Beach will be matched by us so we can reach our goal even faster.
How can I donate?
You can donate through the online booking process for any of our 13 resorts, at the front desk of any of our resorts or online through MUSC. Be sure that you chose Livi Center as your designation in the dropdown menu if donating through the MUSC site and put VMB in the comments section.
What is this disease?
This disease gets its name from mitochondria, organelles that are part of most of the cells in our body. Without mitochondria, the body cannot live or grow properly. The disease happens when this part of the cell cannot create the proper amount of energy for the cells and organs to do their jobs properly. The sad thing is that children who have mitochondrial disease get worse, instead of better, as time goes on and many children die before they reach adulthood.
Who gets it?
About 1 in 4,000 children and adults get mitochondria disease (also known as Mito) in the U.S., which is actually close to the occurrence of the more commonly known cystic fibrosis. Some people inherit it from their parents, while others do not. Each case is different; the severity and symptoms may be different between each patient. Sadly, diagnoses for Mito are not easy to come by and sometimes it takes a long time before a patient is properly diagnosed.
What are the symptoms?
Symptoms vary but my include reduced growth, decreased muscle coordination, pain, seizures, hearing loss, heart failure, developmental setbacks, diabetes and memory loss, just to name a few.
How are people with Mito helped?
Doctors work hard to help people with Mito lead better lives. A variety of approaches are taken to help including proper nutrition, adequate rest, vitamin supplements, controlling body temperature and preventing infection.
Are donations tax-deductible?
Online donations are tax-deductable and can be made at MUSC's website. Be sure that you chose Livi Center as your designation in the dropdown menu and put VMB in the comments section.