My Story by Carole Harrison

Elise is a rare warrior. She is beautiful. She is kind. She is thoughtful. She is funny. She is loving. She is smart. She brings light wherever she goes. She defines strong!

We were blessed with our beautiful daughter Elise in July 2009.  We received her diagnosis in January 2013 after uncontrollable seizures. Elise has a diagnosis of a rare neurological disorder, Subcortical Band Heterotopia, causing developmental and intellectual delays as well as unmanageable Epilepsy. She carries the DCX gene. Some of the neurons didn’t migrate to their destination or didn’t move at all during fetal development. One of our biggest challenges is managing her Epilepsy. Her brain is in constant seizure activity.  Elise has tried many anti-seizure medications. She underwent a ⅔ corpus callosotomy back in May 2019.  This surgery significantly reduced her clusters of tonic-clonic seizures and drop seizures. 

We have a hard time accepting that there is no cure. Seizures suck. They surface unannounced. They come crashing when she is eating, playing, painting, sleeping, having a shower, camping, during her therapy sessions, while watching TV, while taking a walk, while riding in the car, when there’s a change in temperature.  We are on guard at all times. We are always scanning the environment for safety.  We are well aware that Epilepsy will always be a part of Elise’s journey; our hope is to reduce the number of seizures to allow her brain to catch a break.

There are times we feel completely helpless, powerless, and uncertain of what the future will hold. Having a child with a rare condition can be isolating, overwhelming, full of anxiety, and we are very different from the families around us. It can be tough to see how Elise struggles some days, and it can be hard to think too far in advance about what the future may hold. 

This rare journey also has an impact on her sibling’s life. It has taken time away from us being her parents; she has missed out on outings and planned activities, gotten left behind, has often worried about the unknowns, has experienced a roller coaster of emotions, and took on more responsibility.  But this journey has also taught Elise’s sibling empathy, maturity, independence, kindness, seeing things differently, patience, becoming an amazing helper, seizure first aid, and adapting to constant change.

Being rare doesn’t define Elise; she defines herself, which is what today is about for us! Being rare has taught us to be a voice, advocate, keep doing research, be present, live in the moment, and be thankful for every minute we have. Elise continues to teach us every day. We learn to see the joy in the smallest things. To say hello and bring a smile to everyone she meets.  To stop and observe the wonders of the world around us. To see things from a different perspective.

We are so thankful for our village– the love and understanding of our family, friends, and Mike’s work-family is out of this world. We are thankful for Elise’s physiotherapists, occupational therapists, speech therapists, behavioral therapists, respite workers, horse therapists, music therapists, and art therapists. We are also thankful for all the researchers, geneticists, surgeons, doctors, nurses, medical staff, pharmaceutical team, lab tech team, scientists, paramedics, firefighters, and all the wonderful charities that have helped our family. Without them, we would be lost, alone, and struggling day-to-day.

Guest post by Carole Harrison, Rare Mama to Elise

#purpleforelise