Daniel M. - Quilt Finished in 2005

Born: August 11, 1991

Illness: Intractable Epilepsy

Daniel M.'s Story

written by mom Linn

Daniel was a normal healthy baby at birth and reached all the normal milestones at the regular rate.  He had a fairly uneventful chidhood, with the exception of two broken arms in a three month period, but other than that eveything was normal and fine.  Daniel is homeschooled and as smart as a whip.  He was always experimenting with new things and started cooking at the age of two.  Everything in our lives was wonderful, until Daniel was ten yrs old.  One summer day he was playing outside with his brothers and came running up to the house and fell and hit his face and head on the corner of the deck.  His face started swelling immediately and he looked deformed.  We took him to urgent care with all of us thinking surely he's got to have a skull fracture.  Surprisingly he didn't but it was a long time healing from this injury and he had a black eye for six months.  About a month and a half after this injury Daniel had his first grand mal seizure.  We were told it was just a fluke and that this just sometimes happens, well it didn't stop happening.  Four days later he had another one and we were sent to get an EEG that was grossly abnormal.  After this time he had one about once a week for six months and was put on a medication that the side effects were was worse than the seizures.  One day he just stopped having grand mals and we once again returned to our happy life, until Daniel kept getting injured a trip back to the neurologist confirmed our worst fears that Daniel had never stopped having seizures, but they just changed types.  Since then life has been full of seizures for Daniel.  Sometimes he has hundreds a day.  He has lost a lot of ability and things that were once easy for him are now very difficult.  During this period Daniel was also diagnosed with a heart arrhythmia and hypertension.  Some days when his seizures are really bad he doesn't even know how to write his name.  Daniel had to stop doing a lot of things that he loved like riding a bike, swimming, playing on the trampoline and a whole host of other things that are just too dangerous for him.  On February first after trying every medication possible to control his seizures Daniel had an implant called VNS put into his chest.  So far he's doing wonderful with it is so much more bright and alert and is actually able to ride a bike again.

Written by Daniel's mom Linn