Grace's Story

7lbs 2oz, 18 3/4"

Grace Elizabeth LoVerde was born to Derek and Michelle on 2/26/10 at 3:17 pm by C-section because she was breech and wanted to arrive pretty. She was born healthy and whole and was immediately welcomed into our family as our beloved firstborn child.

Aside from the usual adjustments and bumps in the road with a new baby, things were going pretty smoth and we were enjoying watching our little girl grow and develop. On Friday evening July 23rd, life took a left turn as Grace had her first set of seizures at home shortly before bedtime. Two different nurses including our next-door neighbor encouraged a visit to the emergency room where they did bloodwork and a CT scan. Although those came back negative, over the course of the weekend the spasms continued and got more frequent. What they look like is a rhythmic stiffening and then relaxing of the body with arms raising out at her sides and eyes widening.

We met with a pediatric neurologist the following Monday and after being admitted to Scottish Rite hospital a couple of days later, a battery of tests (including a video monitored EEG) revealed Grace had Infantile Spasms. While it may sound like an innocent and temporary condition, it's actually a rare form of epilepsy and a dangerous neurological issue related to brainwave activity. Without successful treatment, the condition usually morphs into more signifcant seizures along with developmental setbacks.

As is typical for this condition, a powerful steroid (ACTH) was prescribed. This medication is considered the "gold standard" of treatment by many who deal with this condition, and as such is unfathomably expensive--$25,000.00 a vial (yes, the decimal point is in the right place!), and Grace needs at least 3 vials. Thankfully we have insurance which is covering all but $4,200 (our copay), but the Lord brought an unsolicited charitable organization our way (NORD) who's picking up that amount. Michelle and I are giving the treatment to Grace at home through injection twice a day in Grace's thigh muscles.

I don't want Grace labeled as a "sick person". She's simply going through a tough time right now (we all have ups and downs, right?) and her mom and I are waiting on the Lord and anticipating His healing touch in His time. Our enemy Satan is seeking to steal, kill and destroy but Grace belongs to Jesus and she has a Mighty God on her side. She also has a mom and dad who love her dearly as well as an army of family, friends, and even complete strangers who are crying out to the Lord for her healing. This is just one part of Grace's lifelong journey, albeit a very challenging one.

To God be the glory!