Meet Ally.
I’ve been impacted by epilepsy my whole life as I have had family members with epi-lepsy. I’ve seen the impact that it has on the person affected as well as those around them. About 1 1/2 years ago, my daughter had her first tonic clonic seizure in her sleep. It was a prolonged seizure which required immediate medical attention. This was just the beginning of our journey. We have spent countless hours traveling to see specialists as we live in a rural area and these specialists are not readily available.
I have seen how this illness impacts a person’s independence as they need to be monitored just in case they have a seizure. Some of the safety precautions have led us to purchase baby monitors and a gate for the bed as her seizures occur mainly at night-time while she sleeps. This can be especially scary as we never know what to expect throughout our nights and early mornings.
She has good days and bad days. She struggles with memory, weakness on one side of her body, chronic headaches, and fatigue. This causes more struggles with keeping up with her schoolwork and needing more help.
A typical day for me consists of calling her specialists, advocating for her needs, researching information regarding seizure monitors, and scheduling appointments. Taking care of all of her needs is like a full time job. Balancing her appointments can be a struggle as some weeks she may have at least one a day which may require us to travel at least one hour one way. We went from her having a pediatrician to having an extensive medical team, which can be overwhelming at times.
Thankfully we have extended family who are available to help us with daycare and bringing her to appointments. I have been fortunate enough to be able to flex my work hours in order to meet her needs with the extensive appointments and need for travel.
Epilepsy has changed our lives as we notice the little things she does every day that she may not have been able to do before and having seizure-free days. It’s been hard to see the impacts and limitations that epilepsy has had on my daughter. She has been a trooper and keeps on going every day with a smile. She copes with the medications and the changes she has had to go through in order to find the right one.
As we travel to all her appointments, she does the work needed for her to con-tinue to progress even though she is challenged by it. She is a brave little girl that has dealt with medical issues her whole life. When a new challenge comes her way, she just says that it is ok and keeps on going.
Connecting with the Chelsea Hutchison Foundation has been such a huge support. We recently got approved for a SamiAlert monitor and this will help us to un-derstand what my daughter is experiencing at night and know that we will be alerted if she has a seizure. Having a baby monitor has helped us, but it doesn’t alert us to all her seizures. I have woken up and found her on the floor in her bedroom, or sleeping in the hallway, not knowing how long she was there for. I don’t think we have had a good night’s sleep since her diagnosis with epilepsy.