Our daughter Elee was diagnosed with refractory (hard to treat and drug resistant) epilepsy at 9 months old after we found her unresponsive in her car seat on a car trip. She spent the next 39 days inpatient at Children’s Healthcare of Atlanta (CHOA) and Medical University of SC (MUSC). We knew after extensive genetic testing that Elee has a small deletion on her 14th chromosome but it wasn’t until June 16,2023 we received notification from Mayo Clinic that Elee has Ring 14 Syndrome with a mosaic pattern. This is an extremely rare condition where her 14th chromosome curled together, creating a circle in some cells instead of being linear.  The prognosis of this condition is not good and we are expecting to have a lifetime of complications and seizures. We are truly devastated by this diagnosis but we will do everything possible to give her the best chance of living life to her fullest extent. 

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Despite 6 medications twice a day and a strict ketogenic diet for Epilepsy, she continues to have clustered seizures in her sleep during nap time and at night. This is apparently common with Ring 14. This puts her at greater risk for SUDEP and prolonged seizures that can cause permanent damage and is associated with regression of psychomotor development and previously acquired language.

 

THIS is the main reason for her service dog. There is no cure and there is no treatment for Elee's lifelong genetic condition but the best thing we can do is keep her seizures as controlled and short as possible to give her the best possible chance.  This dog will alert us when she is having a seizure so we can wake up and react quickly, giving Elee the best chance of full recovery. We will hopefully never find her in her crib or car seat not knowing how long she has been having seizures again. If her seizures evolve to wake times, the dog will protect her by laying her down safely to protect from injury and provide comfort during and after episodes while alerting an adult. When she is older and not with us in school settings, the dog will retrieve her medication for an adult to administer. 

Seizure alert dogs cost $20,000 to the family. There is also a 2-2.5 year waiting list once we pay in full for the dog so this is just the beginning of our journey. We have chosen to work with a reputable company, 4 Paws for Ability, they were featured in the Netflix series Dogs in Season 1 Episode 1. 

 
While we know this dog won’t cure Elee’s seizures, we hope it will give her the best chance at early detection of seizure onset and offer her comfort post seizures. We know this is A LOT of money for a dog but after speaking with a family who lost their daughter to SUDEP, they encouraged us to not think twice. We have also spoken with two families that have seizure alert dogs and swear by their dog's ability to detect and alert for seizures.

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We thank God everyday for seizure free days and full recovery on other days. We have been so blessed with an amazing community and can never thank each of you enough for caring and loving our sweet Elee.

 

God Bless You and Thank You,

Hilary and Erick Bassett