Medical help for Ashlyn
Donation protected
Ashlyn and her family will be traveling to Ohio from South Dakota in June for testing and surgery, they will be there for two to five weeks. We are doing this fundraiser to help the family with medical expenses. Please read Ashlyn’s story below. Thank you very much for your help and prayers.
Ashlyn had her first seizure at 5 years old. Up until that point, it appeared that she was a healthy little girl. After doctors in town continued to tell us that Ashlyn "has epilepsy" but couldn't answer why, we went elsewhere for a second opinion. Since that point, Ashlyn has all of her Epilepsy medical treatment completed in St Paul, MN, where she sees an Epileptologist. Ashlyn was diagnosed with Electrical Status Epilepticus During Slow Sleep or "ESES." This is a disorder that causes "unseen" seizures in people while they sleep, up to 85% of the time. People with ESES also can have clinical seizures, which are seizures that can be seen, which Ashlyn does have. What makes Ashlyn's case so rare, is her seizure activity continues during her awake time as well, meaning her brain never really stops firing seizure activity. If her medications do not control her seizures, she will have seizures almost continually. Ashlyn currently takes 4 different anticonvulsant medications, supplements for her liver due to the seizure medications, medicine for ADHD, and chronic headaches, which include migraines. Because of the constant seizure activity, Ashlyn is cognitively delayed, which is to be expected. She struggles academically and socially. Recently it was recommended that Ashlyn go to the Cleveland Clinic in Ohio for an SEEG. This is a 5 hour surgical procedure of the brain that consists of screwing 10-20 probes into her skull. Doctors will monitor this for 2-5 weeks, as this will tell us what part of the brain that her language is coming from. Depending on where the language is coming from, after the 2-5 week hospital stay, she may be sent home for 8 weeks to heal from the first surgery, to return to Cleveland for a Corpus Callosotomy, which would be disconnecting the two hemispheres of the brain. The hopes would be that after extensive therapy (she would need to relearn how to use the entire right side of her body) that she could potentially be seizure free. Aside from the dangers of any brain surgery, there is a chance that even if the two hemispheres are disconnected, that the seizure activity would move to the right side of her brain.
Even with all of the obstacles and challenges that Ashlyn deals with everyday: headaches, lethargy, loss of appetite and seizures, she is a happy little girl. Her neurologist recently referred her to Make A Wish, which gives children with life threatening illnesses a chance to make any wish that they want happen. Ashlyn chose to go to Disney World, and loved every minute of that trip.
Ashlyn had her first seizure at 5 years old. Up until that point, it appeared that she was a healthy little girl. After doctors in town continued to tell us that Ashlyn "has epilepsy" but couldn't answer why, we went elsewhere for a second opinion. Since that point, Ashlyn has all of her Epilepsy medical treatment completed in St Paul, MN, where she sees an Epileptologist. Ashlyn was diagnosed with Electrical Status Epilepticus During Slow Sleep or "ESES." This is a disorder that causes "unseen" seizures in people while they sleep, up to 85% of the time. People with ESES also can have clinical seizures, which are seizures that can be seen, which Ashlyn does have. What makes Ashlyn's case so rare, is her seizure activity continues during her awake time as well, meaning her brain never really stops firing seizure activity. If her medications do not control her seizures, she will have seizures almost continually. Ashlyn currently takes 4 different anticonvulsant medications, supplements for her liver due to the seizure medications, medicine for ADHD, and chronic headaches, which include migraines. Because of the constant seizure activity, Ashlyn is cognitively delayed, which is to be expected. She struggles academically and socially. Recently it was recommended that Ashlyn go to the Cleveland Clinic in Ohio for an SEEG. This is a 5 hour surgical procedure of the brain that consists of screwing 10-20 probes into her skull. Doctors will monitor this for 2-5 weeks, as this will tell us what part of the brain that her language is coming from. Depending on where the language is coming from, after the 2-5 week hospital stay, she may be sent home for 8 weeks to heal from the first surgery, to return to Cleveland for a Corpus Callosotomy, which would be disconnecting the two hemispheres of the brain. The hopes would be that after extensive therapy (she would need to relearn how to use the entire right side of her body) that she could potentially be seizure free. Aside from the dangers of any brain surgery, there is a chance that even if the two hemispheres are disconnected, that the seizure activity would move to the right side of her brain.
Even with all of the obstacles and challenges that Ashlyn deals with everyday: headaches, lethargy, loss of appetite and seizures, she is a happy little girl. Her neurologist recently referred her to Make A Wish, which gives children with life threatening illnesses a chance to make any wish that they want happen. Ashlyn chose to go to Disney World, and loved every minute of that trip.
Organizer and beneficiary
Karla Knaus Ehlinger
Organizer
Harrisburg, SD
Angela Merrill
Beneficiary