Maegan Haganey is 14 years old and is going into 9th grade at her local high school in her hometown of Inverness, FL. She attends public school with her mom that volunteers as her paraprofessional in her high functioning ESE classroom, using a special curriculum called Access Points.
At the end of 7th
Maegan lives at home with her Mom April, Dad James,
Our seizure journey started at 13 months old from the GI bug virus, C-Diff, & fever. 15 months old from a cold sore. For a while, seizures were controlled with medication, but breakthrough seizures usually always occurred with illness. Age 7-8 seizure-free for 2 years, but sick every month. Age 9 diagnosed with Rare PCDH19 clustering Epilepsy. This epilepsy is drug-resistant and can be life-threatening!
We have noticed that her seizures are triggered by a virus, bacteria, allergies, and allergic reactions. Her body is so sensitive and reacts negatively to so many things! We really never know when seizures are going to strike, but she does have some patterns that put us on alert!
Majority of seizures do happen when sleeping. They usually occur between midnight to 7 am, but surprises are thrown at us and they have happened later in the
Maegan has Grand mal seizures, AKA tonic/clonic seizures. During a seizure her heart rate jumps up to 220 beats per minute, oxygen drops, she stops breathing turning purple and blue, her body is stiff and shakes violently.
We make sure she is on her side during the seizure so she doesn’t aspirate on her saliva. After a seizure she usually is unconscious. When she awakes we try to get medicine in her system. This is extremely difficult and the fight usually begins.
The problem is she is confused and sometimes unable to swallow properly. Once seizures have started we watch and wait
Our goal is to keep Maegan safe, stop the clusters of seizures, and try to prevent her from going into Status Epilepticus from home, but I promise you it isn’t easy!
Our reality with every seizure is she can have a heart attack, a stroke, and even die of Sudden Unexplained Epilepsy Death. No matter how many seizure-free days, the brain and body
Maegan was always above average cognitively with an IQ of 127, everything came easily and she was always independent.
The simple tasks of life are extremely hard for her, and she has to be supervised, prompted, and with someone at all times.
Our family works hard to educate others on epilepsy. We advocate for our daughter and other children with epilepsy! We believe knowledge is
Our biggest goal is to try to break the stigmas and ignorances that are associated with epilepsy and to get people talking about uncomfortable medical topics that are needed to have more compassion and understanding!
Many plans are shifted around or canceled due to the unexpected and unpredictable nature of seizures! We have made up our mind that we refuse to be paralyzed in fear to
We truly feel you have to step out of the box, be open-minded, look for the positive, and be ready to try anything to help your child. Knowledge is powerful! Agreeing to disagree respectfully is crucial, and to give grace for those that say offensive and hurtful comments is a must.
We believe this journey is for a reason! We trust and thank our Heavenly Father Jesus for the strength and peace that he provides us.
We are so grateful for his help to get us through the good and the bad days!
Our journey is one moment at a time and we hope that we can be a light in the darkness.
We hope to encourage others that they can do anything with Jesus and with the support of good positive people by your side and wonderful organizations like Epilepsy Florida and amazing support groups.
We have tried several antiepileptic medications that haven’t helped.
We are trying different
We are encouraged and excited about the results we are seeing. We are grateful for Damion & Tonya Grob & David Forgang at Healthy Hempies for stepping out of the box to help our daughter!
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