Help support Maddie and the Lucas Family

We are fundraising to support my brother Jimmy and sister Becky (forget the in-law nonsense) with their 14 year old daughter Maddie’s medical treatments and safety for her seizure disorder, Epilepsy. 

 

As you may know, our sweet (and beautiful and tough) niece Maddie is fighting a difficult battle with uncontrolled epilepsy. We would love to help support her and her parents with some of the burden of the additional and unexpected out of pocket costs that aren’t all covered by insurance: appointments, testing, therapies, safety equipment, travel costs, medically necessary items, alternative therapies and medications. Additionally needed is Childcare for winter break. Rugs for hardwood floors since she's already had a hard fall on hardwood in the bathroom. We need to secure her balcony. Get a monitor for when she's taking a shower. There’s so much you don’t even think of that’s needed to keep her safe.

 

Below is what is written by Becky (Maddie’s mom) on her fb page about her condition…. Please note that even since she wrote this, Maddie has has 3 additional seizures (for a total of 6 in 50 days) and changes in the medication has not helped.

 

”I wasn't ready to talk about it, but it's Epilepsy Awareness Month and because you may have seen both of my daughters' recent posts, I will shed some light. Your child or loved ones may not have epilepsy. My daughter didn't always. Most of you know she had absence seizures at a young age and they went away for 3 years. Medication free for 2 years. Absence seizures came back early this year and let me tell you we would take those back any day over the kind she has now. They have evolved.

 

Maddie has had three tonic clonic seizures in 20 days. I won't go into details, but they are horrifying, unpredictable and long.

 

We've been busy taking safety measures to prepare if and when it happens again. And it will. We have seizure response cards, she wears a medical bracelet, we have a baby monitor with audio and video for nighttime as well as an indoor video camera (we plan on buying more). We have rubber padding on table and dresser corners. Toilet lids stay down. Unlocked bathroom door during showers. There is a care response team specifically for her at school. She has friends that walk with her and interlock arms on the staircases at school. I've looked into a seizure response dog, but no chance in that because it costs more than a brand new car.

 

She is currently on medication that has been adjusted three times. I've discussed treatment plans with her neurologist including CBD, but that is not the route we are taking at this time. 1 - while there are successful studies on three types of seizures, hers is not one of them, 2 - CBD is not covered by insurance....at all, and 3 - you cannot always get consistent product so if we found one that worked, imagine the heartbreak if it was discontinued or the formula changed.

 

Right now we don't have answers. We don't know the "why" and we don't know what is eventually going to control Maddie's epilepsy. Could be increasing the dosage or adding another medication. Right now we just make sure she stays hydrated, gets enough sleep, avoids stress and illness to the best of our ability and eats on a more breakfast/lunch/dinner and snacks routine rather than her old habits of skipping meals and eating junk before a meal.”

 

Maddie girl, we love you and will fight with you forever!

 

**Updated from Becky: Medication has now been adjusted 4 times with a new medication added.

When I first asked about an MRI or other kind of testing I was told an MRI wouldn't tell us anything different than the EEG did because it is not pinpointed to one area of her brain. When she has a seizure it happens to the entire brain. I'd like to challenge that statement and get further testing anyway because the EEG she had was only reflecting results of the absence seizure and not the tonic clonics she's developed.