If you ever wonder what it is like to meet an Angel on Earth just look into the eyes of Emma and she will speak straight to your soul. Emma age 6 becomes friends with everyone she meets. She will sit close to you and though she is nonverbal Emma will make sure you know when you walk away that she thoroughly enjoyed her time spent with you. Emma had her first seizure at age 2, after a positive EEG we saw a Neurologist who told us that many kids out grow seizures by the age of 5 and that we would start her on a medication and in 1 year repeat a EEG. Well the first year didn’t go as her Neurologist “thought” it would as seizure activity started happening more frequently and medication increases were constantly being made.
After Emma was maxed out on 2 seizure medications and still having daily seizure activity we were sent to Children’s Hospital for further testing. In September 2020 after the Epilepsy Team ran 2 days of testing at the Children’s hospital, I can still remember the team of medical professionals coming into our room. (Due to it being Covid times only 1 parent was allowed at the hospital) It was that day that me, Emma’s Mom, with Emma sitting on my lap that I was told that Emma has a rare and complex seizure disorder called Lennox Gastaut Syndrome.The team of doctors explained it as most people with seizures have 1 type of seizure in just one part of there brain and that Emma was unfortunately having multiple different types of seizures and it was affecting every lobe of her brain. They went on to explain that they is no cure to this disease and that it is complicated and every child presents differently. I was told that it is a progressive disease so more then likely how Emma is at this point is the “best” she will be and that our goal is to find a regimen that gives her the best quality of life.
Emma went through extensive genetic testing as this is known to be be a genetic disorder. The doctors found it very confusing that Emma hit every milestone in her first few years of life including learning to talk and walk as many of these types of kiddos with this disorder don’t. Having to call Shaun and other family members with this news was the hardest thing I have been through. Emma was 3 years old. That day a plan was made on different medications we would try to help Emma. Fast forwarding to today we are still trying to find answers. Emma has gone through many medication trials none at which have helped decrease the number of seizures Emma has in a day. Emma started refusing medications which lead us to have to have Emma getting a G-tube placed to administer medications through. Emma has been placed on a Keto diet which is known to help decrease seizures in kids- unfortunately this diet was not helpful to Emma at all in fact caused her to vomit on a daily basis and lose weight so had to be stopped.
The most recent intervention Emma has had was a VNS (vagus nerve stimulator) placed to again hopefully help decrease the number of seizures we see in a day- this too unfortunately is not helping. Emma has meant a handful of care professionals all which call Emma complex, not really the word you want to be told in the medical world. We are currently awaiting news to see if Emma can be a part of a medical study to help guide her Neurologist in treatments that may be beneficial to her. Emma goes to Speech therapy, Occupational therapy and Physical therapy weekly. She attends Kindergarten. She walks with the help of a walker. She is nonverbal and has a speech device that we hope someday will help her communicate with us better. Emma has many seizures every single day.. not one day goes by that she has not had a seizure. Emma is special. She is loved. She adores her 2 older sisters.
She doesn’t know she is different- she wakes up each day with a smile on her face and goes to bed every night with prayers we send up to heaven asking for healing. Emma’s Neurologist has told us multiple times miracles happen and to not give up on HOPE and we as Emma’s family live each day making sure she knows how loved she is and how much JOY she brings to all of our lives! Anytime you see Emma you will no doubt probably more then likely see a book in Emma’s hand. Books are her most favorite thing: looking at the pictures, flipping through the pages, imagining she is part of the story.. so when we got nominated to have Emma be a part of this amazing opportunity what a better thing to ask for then a special place for her to be with all her books, a special place for her sisters to take her to read her stories, a special place to fall asleep to and dream about someday having a book being written about her! We are honored and so very blessed to My Happy Place! I can’t wait for you to meet our Emma!! Thank you! Melissa
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