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Hear directly from the families we support through our mission.

Family Stories

 

Blythe

16 months, California

October 20th has always been a special day in my family. It was a birthday first claimed by my aunt, my grandpa’s sister, and later by my beautiful mother. On the morning of October 20, 2016, I was 36 weeks pregnant with my second child and had been having enough false labor alarms to schedule an appointment with my doctor who told me that he would be seeing me soon. Except soon was sooner than he thought, and I was indeed in labor. That evening, during the last hour of the day, I gave birth to our second little beauty, Blythe Evangeline, making October 20th even more special than it was before!


She was perfect! My heart was now fuller than ever. A beautiful bright two-year-old daughter and now this little gem. Man, was I happy…and all-of-a-sudden very hungry!  For some reason I like to have my kids when all food joints are closed, so at almost midnight I sent the hubby out on a food run. Thank you, Del Taco! 


For the first couple months life at home was very chaotic and testing as I was learning to juggle a jealous toddler and needy newborn. Funny how it is when you’re so full of love, you get through it.


Vaccinations have always been and always will be a hugely debated topic between parents. Honestly in my opinion, there is no right or wrong. Each parent is doing exactly what they think is in the best interest for THEIR child and for me I think they’re good. My now three-year-old is up-to-date on her vaccines but my now fifteen-month-old is not. Blythe, has only gotten vaccinations up until she was five months old.


March 20th, 2017, was a day we will never forget. It started off as a normal day with a doctor appointment to get Blythe her 4-month vaccination (a month behind, oops) at a time she seemed to be getting a cold. The doctor said she would be fine and we proceeded with the shots. She ended up taking a 3-hour late nap that day. My husband had gotten home from work shortly before she woke up and when she did she felt warm. I took her temperature and got different reads each time with 101° being the highest. While she sat there playing with her big sis, I went to get a diaper and then we noticed her slump down. Earlier that day, coincidentally, I watched a video on Facebook about a child receiving vaccines then having a seizure. Never does a parent think it'll happen to their child and now it was possibly happening to ours. It was a very subtle twitch and she was coherent, so I let it go for a couple of seconds then realizing it was indeed a seizure, my husband called 911. This first seizure lasted over 1 hour. After being sent and admitted to a Children's Hospital we were sent home with a "Febrile Seizure" diagnosis. This doctor did not want to do any further testing being that she was far too young for Febrile seizures as he kept stating.


Many more seizures later, a new Children's Hospital, many EEG's, 24 hours (turned to 48 hours) in a hospital EEG stay with genetic testing, here we are! After waiting months to hear back for the gene results, we finally had an answer, and not the answer sadly we wanted. Our Neurologist always told us "You do not want me finding an answer because if he did there is less likeliness that she will grow out of it."  My heart sank at the news and I held back my tears becoming numb as he was explaining everything to me. I later had to ask my dad, who had come along, to re-tell me all that just happened because I couldn't even process. Her most recent diagnosis on paper; "Other generalized epilepsy and epileptic syndromes, not intractable, with status epilepticus - SCN1A gene mutation."


I won't define all the definitions to the SCN1A gene mutation, but it is a big spectrum of mild to severe epilepsy disorders. The one being on the severe end is called Dravet Syndrome. Even though this Syndrome is on the severe side of the spectrum it still has a HUGE spectrum which we still don't quite know yet where our sweet B falls. I believe seizure control has a HUGE part to do with where she falls. At this point we have now been through two heavy medications that are not working and lots of hope and prayer. 


This is a slimmed down version of how we were brought into this new life changing forever disorder and why I am now a voice for my daughter and other families that have been diagnosed with this mutation. I continue to hope that somehow my daughter will have a good life and by sharing my story it will help others to know that they’re not alone.