Robert is a 10-year-old boy who likes to play games. He’s a great young boy who cares about his family, and he’s fortunate to be a member of a large family of 12, which include seven brothers and sisters, two parents, an uncle by marriage and a baby cousin. He’s got a lot of love in his life, but Robert also has intractable epilepsy. Unfortunately, medication doesn’t work for him, and since he was a baby, he’s had seizures. These seizures are life-threatening.
What is Intractable Epilepsy?
According to the University of Rochester Medical Center, “Intractable epilepsy is a seizure disorder in which a patient’s seizures fail to come under control with treatment. These seizures are sometimes also called ‘uncontrolled’ or ‘refractory.’”
One of the main challenges of patients who suffer from this affliction is the quality of their lives. People like Robert have to be careful about accidents during seizures. Simple tasks that most of us take for granted can be threatening to people who have intractable epilepsy. Individuals with this disease have to be monitored when showering, swimming, driving, etc.
Robert’s Life with Intractable Epilepsy
Since early childhood, Robert’s parents are committed to helping him have the most normal childhood possible. When he was old enough to begin school, they enrolled him. However, because of the seizures, he missed a lot of school, and eventually, Robert’s mother quit her job to care and homeschool her son.
Intractable epilepsy has been difficult on young Robert and his family. Due to the seizures that do not stop when they start, Robert’s been placed in a medically induced coma and ventilator five times in the past three years. His mother said these procedures are necessary to help the “brain can cool off and stop having seizures.” This medical treatment is critical because when he seizes, the seizures can be constant and he doesn’t regain consciousness.
Seizure Alert Dog
After research and years of experience, Robert’s family decided that he needed to get a seizure alert dog. A service dog is specially trained to detect seizures before they occur, which is essential for Robert. In addition to alerting the family when Robert is about to have a seizure, giving the family precious moments of preparation, the dog allows Robert to gain his independence. Robert has an around-the-clock companion, including when Robert sleeps, showers or plays.
Before Robert was partnered with his dog, his mom said, “This is going to be life-changing for us as it will allow Robert to have some independence and confidence as he will be able to do things on his own and the dog will be able to detect ahead of time before seizures happen. It is called pre-alerting. We hope in time Robert will be able to sleep alone and gain great strides in life as he gains some independence.”
4 Paws for Ability
Various organizations provide adults with service dogs, but there are only a few that give children a service dog. One of those such groups is 4 Paws for Ability, which is a nonprofit that places task-trained service dogs with children and veterans.
4 Paws for Ability works with thousands of people around the world. However, there is some fundraising that families need to do when they are seeking a service dog trained by them. In the case of Robert’s family, they had to raise half the cost of training for the dog that would be assigned to Robert before training began. Once that was met, 4 Paws scheduled a class date and training for the family with the new service dog.
Collecting Gently Worn, Used and New Shoes
My fundraising company got to know Robert and his family when they came to us seeking a creative fundraiser. They were able to collect the funds necessary for the dog training on their own, but they needed money to have the entire family travel out-of-state for the training and pick-up of Robert’s mascot and lifeguard.
They decided to do a shoe drive fundraiser with us by collecting gently worn, used and new shoes. We issued a check for the total weight of the shoes. They didn’t have to ask for money, sell anything or do anything more than ask for shoes.
The family’s fundraiser was a success, and they owe it to the dance studios, churches, and businesses which helped them collect the shoes. And as a supporter of the cause said, “Every pair of shoes was like a prayer for Robert.”
Author of “Not Your Father’s Charity: How to Dominate Your Fundraising to Create Your Success” (Free Digital Download)
© 2017 Wayne Elsey and Not Your Father’s Charity. All Rights Reserved.