Infant's seizures lead to humanitarian organization
Kellsey McGuire was a healthy baby girl. It was, as her mother, Brandi, said, "by the grace of God," that she chose to check on her during her nap. It was one average day in the life of her 20 month old daughter.
Had she not, June 28, 2007 may have ended in tragedy.
Brandi found her daughter blue and not breathing in her crib. She immediately tried to remove anything obstructing her airway. There was nothing. Panicked, Brandi took her daughter as fast as she could to the Emergency Room.
Doctors immediately began working on her until she was responsive. It was later found that what she had experienced in her crib was "status epilepticus," which means she was continuously having seizures one after another, and her body was shutting down. Kellsey was transferred to OSF Children's Hospital in Peoria, where, after numerous tests, she was diagnosed with Temporal Lobe Epilepsy, meaning she suffered from complex partial seizures.
Her seizures, explained her mother, are not what is commonly thought of when one hears the word seizure. She does not convulse and have uncontrollable muscle spasms. Rather, since she was young she would, "lip smack" and stare off into space during a seizure. Signs of complex partial seizures in children are subtle. Someone having a complex partial seizure will not be aware of their surroundings, and will not be able to respond or remember what happened during the seizure. They go into a trance-like state. Without the usual well-known, "obvious," signs of seizure (typical of tonic chronic seizures, formerly known as grand mal), it's hard for unprepared parents to realize something is happening until their child turns blue, seemingly out of nowhere.
They say Kellsey, now 8, may never be able to drive a car. In Illinois, to get a driver's license a person must not have had a seizure for at least 6 months. With the right combination of medications Kellsey has seizures only once or twice a month. Medications must always be changing based on her growth. Kellsey is allergic to the mainstream medicine prescribed for Epilepsy, so it has been more difficult to find the right combo. The "Drugs have different effects," Brandi explains that the drugs calm the brain but a side effect is that it also slows down learning.
Currently she is on two medications that balance each other out, lessening the side effects. Kellsey's Epilepsy is, "Not life threatening at this point, but you never know because she could go into 'Status' anytime, like she did before." Brandi explained.
Her immune system is vulnerable, so she gets sick more often than other kids. Whenever she gets a simple cold or flu, the medications cannot work to their full capacity because her body is trying to fight it, "so it's dangerous," detailed Brandi, "she has multiple seizures because of that."
When they first began this journey, Brandi and Colin McGuire, of Sherrard, educated themselves as much as they could, but resources within the community were scarce. As Brandi decided, "We had no one to turn to, so I'm going to do this." She wanted to help kids and families and take away the stigma that she found to be associated with Epilepsy.
In November of 2011 the McGuire's started the organization called Ribbonsforkellsey as a way to educate others about the risks of Epilepsy and the importance of diagnosis at an early age. She began by inviting anyone to request a free 'purple' ribbon to wear for the month of November, Epilepsy awareness month. Brandi noticed that breast cancer awareness, with its pink ribbon, was so well known - yet epilepsy affects over three million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Approximately 1 in 26 People in the United States Will Develop Epilepsy at Some Point in their Lifetime (according to epilepsyfoundation.org). Their original goal was to give out 500 ribbons, 100 for each year since her diagnosis to anyone who would wear them every November. They distributed 2,000 that first month. The McGuire's were flooded with emails from other families struggling with Epilepsy, it was then that they realized the need was real and they had to help fulfill it.
Ribbonsforkellsey, Inc. became incorporated in 2013 and non-profit status is pending. What began as an awareness campaign has expanded to include raising money for medical equipment for children in the Quad Cities area and vicinity. Ribbonsforkellsey has provided anti-suffocation pillows to 15 families and hopes to double that number in the year ahead. It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus, (what Kellsey experienced at 20 months), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents (statistics taken from Ribbonsforkellsey.weebly.com). Like the name infers, these breathable pillows are designed to help people at risk of SUDEP. Each pillow costs $130 shipped, they are available only from the U.K.
They plan to hand out three more pillows at their upcoming fundraiser.
Their first fundraiser, called Candy Bar Bingo, brought in $15,000 and they had more people come than space allowed. The next year they used a bigger venue, yet they were still over capacity. This year Candy Bar Bingo will be Feb. 22, The Stern Center has been donated for use located at 1713 3rd Avenue, Rock Island. It holds 700 people, that's only one hundred more than attended last year. "I don't know where to go to hold more people!" Said Brandi. There is no charge to get in, and it's only $1 for a bingo card to play. If you get a bingo you win 100 full sized candy bars. There will are 20 items for live auction and 20 for silent auction, and 46 baskets to bid on. Visit their website www.ribbonsforkellsey.com to see items featured up for auction. A few notable items are: a ride in a private jet, a basketball signed by the University of Iowa Basketball team, autograph from Chevy Chase, a Carrie Fisher (Princess Leia) autograph, University of Iowa football player banner that hung in their stadium and a hockey stick from the Mallards, just to name a few.
Mulkey's restaurant is donating chili, there will be hotdogs, and chips donated by Happy Joes in Aledo. Dinner is by donation only. Doors open at 5:30 p.m. with bingo at 6:30 p.m. There will be karaoke and a D.J. for a dance later in the evening. "We wanted to be family friendly," said Brandi.
"Every single thing you see at this event, not one of them was purchased by ribbonsforkellsey," Brandi explained that everything has been donated by area businesses. "They all want to help, we have a really wonderful community."
This year a portion of donations will go toward a 19 year old girl to receive a therapy dog. These dogs are a major expense for a family devoting their income to expensive medications. With the help of an organization called Disability Assistance dogs (DAD) of the Quad Cities, this number is half for families looking to have a disability service dog.
The McGuire family raised the $10,000 they needed for Kellsey to have a seizure response service dog at last year's Candy Bar Bingo, and what an amazing help he has been, explains Brandi.
Jasper was trained to detect and alert someone when Kellsey emits a specific scent when she is about to have a seizure. Some dogs can even detect a few hours prior to a seizure. He keeps a watchful eye on Kellsey as she sleeps at night, "He is trained that if she opens her eyes, he comes and gets me," said Brandi. So far he alerted her parents 10 minutes before a seizure. He knows how to open doors, turn on and off lights, among many other important maneuvers. Brandi explained if she says, "Go find Kellsey," he will lead her right to where she is.
Their biggest fear is that Kellsey will stop breathing like the day that lead to her diagnosis, so for years her parents would check on her multiple times a night even staying up to watch a video monitor while she slept. Now that they have Jasper Brandi explains, "My husband and I have never slept so well." They are thankful to have him there protecting their child.
Jasper never leaves Kellsey's side. He even goes to school with her. Kellsey is a second grader at Sherrard Elementary. Her teacher has already told Brandi that with Jasper at her side she has exhibited a more confident behavior, asking questions and being more involved in her studies. Anxiety and depression commonly accompany patients of Epilepsy, service dogs also provide therapy to help relieve stress.
"Someone gave up on this dog and he is so smart, I've never met a dog this smart before!" Brandi said Jasper was brought into the welfare center, starved, and with mange. He was abandoned. Now he's bonded with Kellsey and trained to save her life.
Shelter Dogs Change Lives
Unwanted, unloved, and given up on. These words describe the life of a typical shelter dog. Jasper, Kellsey's seizure response dog, was transferred from the Knox County Humane Society in Galesburg as a candidate for training with 'Disability Assistance Dogs', (DAD) for short.
The dogs go through rigorous training and testing until the right match is found based on the needs of the particular applicant. Then the dog spends up to two years in training living with a professional. Jasper, Kellsey's therapy dog, and Kellsey trained together every Sunday for six months until he was fully prepared to come home with her. The cost of a specially trained dog, is around $20,000. Half the cost was raised by ribbonsforkellsey and the other half was funded by 'DAD'.
The Mission of Ribbonsforkellsey is to provide families with resources to aid them in the 'marathon' of Epilepsy. It's made up of four board members, and 12 committee members, all 100 percent volunteer efforts. "Every dollar that goes into Ribbonsforkellsey goes right back into the community," said Brandi. All members of ribbonsforkellsey are committed to increasing awareness and providing opportunities to those with epilepsy.
To learn more about Kellsey's journey, epilepsy, and how you can get involved, visit their website at www.ribbonsforkellsey.weebly.com. Learn about the work 'DAD' does at www.disabilityassistancedogs.org.