07 Dec Matthew and Meredith: A Sibling Perspective
SLC13A5 Epilepsy affects not just individuals, but entire families. Children with this severe neurological disorder need constant care and monitoring, and this does not change as they grow to be adults. Following is a sibling perspective, as told by Matthew, a 15-year-old brother to TESS Superhero Meredith:
My little sister Meredith has SLC13A5 Epilepsy. When my mom was pregnant, I would talk to her belly every day, telling her about my day and how I could not wait to meet her. I used to call Meredith ‘Jeff’ before we knew she was a girl – and when we learned her gender, I started to call her ‘Jeffette.’
The day Meredith was born I was so excited to finally meet her. We went to the hospital and when I held her and said ‘Hi, Jeffette,’ she smiled! Everyone was shocked and happy! I found out the next morning that Meredith was sick but they didn’t know what was wrong with her. I was so sad and scared.
I visited Meredith every day in the NICU. Once she was stable enough to come home, I held her and talked to her all the time. She still had many seizures and went to the hospital a lot, which was always scary. I will never forget how when she was about eight months old, she had a seizure that wouldn’t stop. Meredith’s body was jerking uncontrollably and she turned blue. My mom and dad rushed her to the hospital and we were so scared she would die.
Meredith is four years old now, and through everything she smiles and gives hugs. She is also very bossy and gets her way without talking, which makes me laugh. Thankfully, her seizures are no longer as bad, but her being disabled is still so hard. I hate that she suffers every day and that we never know when she will have another seizure. I hate that she has to take so much medication twice a day, every day. She wants to talk and walk so badly and it is hard to watch her struggle. I wish she could tell me what she wants or how her day was. I wish she could chase me outside or run into my room to get me to play.
I wish people knew how hard it is for children with SLC13A5 Epilepsy and their families. SLC13A5 is more than just epilepsy, it affects every part of our lives. Kids with SLC13A5 Epilepsy are almost completely dependent on their caregivers and will need someone to take care of them for the rest of their life. For me, it is hard knowing I will have to care for my sister 100% when my parents no longer can, but I am happy to be the one to do so because I love her so much. SLC13A5 Epilepsy is truly a life-changing diagnosis for everyone involved. I hope one day there is a cure, and life will be different for all kids affected with SLC13A5 Epilepsy.