Wrenley’s Story
Told by Branna, Wrenley’s Mom
Wrenley was born a fighter. The morning after she was born, my husband and I noticed her first seizure. She was rushed down to the NICU where she was intubated and put on multiple IV medications to stop her seizures. MRI’s showed enlarged ventricles and thinning of her corpus callosum. During this time tests also showed she has a very rare genetic disorder. She was put on Keppra as a medication she would have to be on once we left the hospital. After 50 days in the NICU we were finally able to bring our baby home.
We were then able to spend 55 days at home but unfortunately her seizures came back. She was in status epilepticus which required her to spend a few days in PICU followed by a few weeks on the wards at children’s hospital. During this stay she was diagnosed with refractory epilepsy, placed on new medications and we switched her to a ketogenic diet which required her to have surgery for a g-tube. The following months, she was admitted a few other times due to seizures. Those first 6 months of her life were rough and at times frightening for us as a family. It was truly tough having to watch her go through everything she was dealing with.
Today she is currently on 5 different anti epileptic medications and remains on her ketogenic diet. Her most recent EEG has shown the best results we have seen and has allowed us to feel like we can finally breathe. We truly believe we were given the medical team Wrenley has for a reason. We have seen them work so hard trying to get her seizures as controlled as possible. They have also been a wonderful resource educating us on Wrenley’s seizures as for the longest time they were difficult to pinpoint. We truly cannot thank her neurology team and other specialists enough. Their knowledge, expertise, and compassion have really stood out to us.
I can go one in details talking about Wrenley’s first 11 months of life, but we would be here for days. It truly has been a rollercoaster of emotions. No one can prepare you for what it’s like to become first time parents, let alone first time parents to a medically complex child who has been in and out of hospital. She has gone through more than I can even imagine. There are still many unknowns about Wrenley and she faces other challenges. Her milestones look different than what milestones may look like for other children. She has good days and bad days, but seeing her smile lights up our world. If there is one thing for sure it is that we will never give up hope and will always be her biggest cheerleaders and advocates in her life. We are extremely proud to call her our daughter and we can’t wait to watch her write her own unique beautiful story in this world.
Why am I participating in the 1 in 100 challenge? My answer is simple — it’s the least I can do. I see how hard Wrenley fights every single day, and I have seen how hard her amazing neurology team works for her. Before having Wrenley, my knowledge was extremely low regarding epilepsy. If me participating in this challenge can help bring awareness to others and help raise funds to go towards epilepsy research, then I would take that as a win. It’s my way of acknowledging not only the strong individuals who are living with this diagnosis, but the specialists who have dedicated their lives to help families like ours. People with epilepsy should not feel alone, and things like this challenge help bring together a community.
Support Branna’s 100KM CHALLENGE and her goal to raise funds for epilepsy research.
We are grateful to Paladin Pharma Inc., our 1 IN 100 Title Sponsor for their ongoing commitment to our cause and improving patient health by providing support to initiatives for patients.
