Meet Raegan Grace:
Before we moved from Yuba City I was part of a wonderful mom’s group. While I was only a member there for a short time before we had to move, I got to meet some wonderful ladies and kiddos. One of them was Raegan. More about her in a few – since she is the whole reason for this post.
A bit of history on my childhood. I have one sister. When she was 5 years old she started having seizures. I was only 3 at the time. The path my sister took ended up in brain surgery. She was having too many seizures a day that medication was not controlling. By the time she was 10 years old there was no other option other than surgery. She had the left half of her brain removed to control the seizures. The story of my sister is a whole post (or two, or ten) of itself. But that is not the reason for this post. Raegan is. My sister is just the piece of my history who has made me who I am today and why Raegan’s story is so special to me.
Meet Raegan
Raegan is a sweet 3 year old girl who has an incredible story and a very hard path ahead of her. As an infant she has infantile spasm seizures, but has been seizure free for just over 14 months. However after observations of her family led to a 3 day EEG it was discovered that she was having a huge amount of seizure activity and after several courses of treatment was diagnosed with Medically Refectory Epilepsy. This means she has not responded to any medications and the only course of action for Raegan is brain surgery. It is so important that the seizures come under control, because they eventually would cause Raegan to plateau cognitively. All of the constant abnormal activity going on in her brain, will not allow her to progress much beyond where she is now, developmentally.
Raegan is scheduled for 2 brain surgeries, the first is to lay a series of grids that serve as a map on her entire left hemisphere, so the doctors have a clear picture of where the brain is affected and the problem areas that need to be removed. One week later she will undergo a second brain surgery to remove the epileptic lesions that are affecting 3 lobes of her brain. This is known as a 3-lobe resection. Her surgeries will take place 1/28/13 and 2/1/13.
Raegan also has a younger sister. They share the same age difference as my sister and I. Raegan shares a similar story to that of my sister which is why her story touches me beyond what it should a “normal” person.
So why am I posting about this? First and foremost for you to pray for this precious girl and her family as she undergoes surgery and recovery. Second to ask for your help. Raegan’s family is lucky to have health insurance, but the copay for the surgery and recovery process is extraordinary.
Raegan’s mom blogs about her progress at Raegan Grace is Blessed. Please go read about this precious little girl’s story. She has also created a facebook page to keep family and friends up to date on her progress.
How to Help
My personal goal for my blog and my life is to use the things I’ve been given to help others. Normally this is through activities to help moms (and dads) engage with their children, or as many of you have found me – freezer meals to make dinner simpler but still healthy. Today I hope that we can all band together to help Raegan.
Friends of their family have set up a donation page if you feel led to help them out. There’s a more detailed story about her there as well as the blog. A little goes a long way. And from the bottom of my heart: Thank You.
Comments
One response to “Raegan Grace”
My thoughts and prayers are with Raegan and her family.
I too have a special place in my heart for Raegan.
I have twin daughters. One of my girls had her 1st seizure at the age of 4.
18 months later she had a 2nd seizure. Exact copy of the first. We don’t know why – even with fast medical intervention both of her seizures lasted 35 – 40 minutes. Her seizures are Focal. It’s difficult as a parent to be helpless to your child. After pushing for a Neuro Psych evaluation, it’s mind boggling to attempt to understand what chaos an electrical storm can do to their sweet developing brain.
We have a long road ahead, we are faithful in knowing God hears our prayers.
Please know Raegan has a VERY SPECIAL place in my heart and prayer life.
God Speed sweet Raegan!