Our Story

Founded by Margaret and Chris Chase after their daughter, Larkin, was diagnosed with epilepsy. Larkin's seizures began in August 2017. That morning she woke up acting very tired, but we had played hard all weekend so it made sense. Margaret put her in a lounge chair to rest until she was ready to get up. Larkin stayed sitting up and  stared with side to side eye movement. Again, we thought she was just an overtired toddler, falling asleep in strange positions. A few moments later, she was flopped over asleep again. So we let her sleep while packing up for our day out. Once everything was done, Margaret went to get Larkin ready, only to find her completely purple from the elbows and knees down and extremely lethargic with very little response. Minutes later, color started to return but Larkin continued to act out-of-sorts and lethargic. On the way to the ER, she turned a shade of gray. She would stare off, droop her head, whine, and appear zoned out. At the ER, they did an EKG and monitored her for six hours then sent us home with a diagnosis of Raynaud's disease. Margaret spent the next few nights sleeping in Larkin's room, terrified this could happen during the night. We knew something more serious was going on. The next few days, Larkin was very tired, took several breaks from playing, longer naps, and restless nights. Our pediatrician sent us to a pediatric cardiologist, who did an Echo with normal results. The cardiologist asked again for the story and immediately said she had a series of seizures. We then took her to a pediatric neurologist and completed bloodwork, in-office EEG, ambulatory EEG, and MRI. Thankfully, the MRI was normal. However, she had seizure activity on both EEG’s. In between all the doctor visits and waiting for tests, her seizures continued. While the seizures awakened us, Larkin never fully woke up. Most nights she slept in our bed so we could hear her breathe and be right there to keep her safe. As time went on and we continued to wait for answers, she began to have a wide array of seizures, sometimes up to 10 a day.

Larkin was diagnosed with epilepsy in October 2017.  This is when she began her journey with anti-seizure drugs. After Larkin’s diagnosis, she was given medication and sent home. The severity of the disorder did not sink in until we began our own research and found out how common, yet unknown epilepsy is. Larkin has been on five different anti-seizure drugs, none of which worked 100% and all produced unbearable side effects. We feel very fortunate to get Larkin the care she needs. The costs of medications can take a toll on families, especially when medications do not work and must be thrown away only to be immediately replaced with another. In one month, we filled three different prescriptions for Larkin and each one had to be stopped due to ineffectiveness to stop the seizures or severe side effects. In April 2018, we switched her care to Rush University Medical. She is now on her sixth anti-seizure drug, which we are excited to say is showing great promise. Larkin is not yet in the clear, but we are in the right place and confident that with time, we can achieve what we have been aiming for which is zero seizures. This is a financial burden for lots of families and many are unable to pay for vital medications. Many individuals living with epilepsy are able to work but unable to drive. All funds raised go directly to pay for medications and transportation for those in need. The Lou Bird Team is made up of many area families who are also affected by epilepsy.

Meet the Team

We are a small but dedicated team

m

Margaret Chase

Board Member

After our daughter was diagnosed with epilepsy, doing nothing was not an option. Having life standstill was also out of the question. We have 3 kids, who all deserve to be kids. That meant continuing with our plans, soccer, trips, after school activities, swimming, and parks. Epilepsy is something we live with, but we make our best effort to not let it dictate our lives.

Most seizures are not textbook examples, they present in many different forms, which most people would not label as epilepsy. Larkin's initial seizures were confusing and took months to diagnose. She later developed more telltale signs of seizure activity. The more research we did, the more we realized just how many seizures a day she was actually having. What began as a search to get her the best medical care turned into McHenry County's 1st Epilepsy 5k and a nonprofit with some really great team members. Larkin has her medications without any worry about costs and now we want to help others achieve the same.

amy2_edited-1

Amanda Marrazzo

Board Member

I am inspired to help in this important effort for McHenry County residents out of the love for my own daughter, Abby, who at the age of 13 was blindsided by epilepsy.

This medical condition that led us down this tricky road came with a sudden and fierce intensity in February of 2013 after a long weekend of dance competitions. Up until then Abby was perfectly healthy doing all the things teen girls do. Epilepsy significantly altered our lives and brought on a new level of  fear and worry that we could have never imagined.

Epilepsy has no rhyme or reason in my family and it was not invited. Nothing Abby did, or did not do, caused her to have epilepsy. This is an unforgiving, unpredictable and nondiscriminatory medical condition that has no cure. Sadly, it is the cause of death for many.

It took a few medications, a couple of different doctors, years of sleepless nights, a traumatic seizure in school and lots of tears but we finally got her seizures under control.  July 13, 2018 marks three years seizure free. Although I still feel the weight of worry every day, especially now as we are adjusting her medicine as one of them is causing negative effects on her body.

But the blessing here for our family is that we have health insurance and can afford to pay for what our daughter needs. The bills, which quickly soared into the tens of thousands of dollars, have been covered. This is not the case for hundreds, if not thousands, in our county alone.

Our main efforts in raising money is to help people pay for their anti-seizure medicine and provide transportation as needed. Those who have not gotten their seizures under control cannot be alone, drive, hold down jobs - the simple things we all take for granted. These folks need our help.

Though my family is blessed to have the resources today to help Abby we realize that may not always be the case. This is our chance to pay if forward and to set a course for others to understand the condition, become aware of the need, and want to help.

My family and I thank you for your compassion and willingness to help McHenry County residents living with epilepsy.

becky

Becky Wipperfurth

Board Member

When my son was diagnosed in 2017, at age 12, it was like a need to know diagnosis. We told friends and family because we coveted their prayers, the school and soccer coach, but outside of that it was a silent diagnosis for us. It really didn't affect our day to day life because outside of the 2 initial seizures they were all at bedtime. We didn't realize until we were talking with some soccer families that everyone has their "thing." Epilepsy is our thing. That thing for you can either be private or you can use your thing to help others, even if it means helping someone with a new normal.

We have been through testing and multiple drugs. We are very fortunate to have insurance, and for a while an HSA account contributed to by my employer, to cover all the costs. We have a fantastic support system through the McHenry County Epilepsy foundation who we have called on a Sunday night at 10, after a seizure, and have received just wonderful care and encouragement.
That office supports so many neighbors who cannot afford the medications and who cannot drive themselves, because of their condition, to the appointments and support groups. I think it is amazing that they are funded on grants and are able to offer the level of support that they do.
When I found out about Lou Bird it was the least that I can do to help raise awareness for this diagnosis that affects so many people. It's my honor to be a part of such a wonderful organization.
beth3

Beth Armstrong

Board Member