- L
Kaycee was a typical, active little girl until she was stopped suddenly in her tracks just after her 5th birthday. She began having seizures; seizures that medication cannot stop; Seizures that have stolen so much of her childhood. Kaycee went from reenacting American Ninja Warrior to barely being able to walk up & down the stairs.
Kaycee's seizures have not only caused countless trips to the ER both by ambulance & life flight, the seizures have also stolen the vast majority of the mobility on the right side of her body. Watching our baby girl regress & not being able to do anything about it has been a nightmare.
After much testing it has been determined Kaycee has Rasmussen's Encephalitis. This is a very rare, autoimmune disease which has caused her body to attack the left side of her brain. There is said to be less than 500 diagnosed cases in the world right now. Since it is so rare there is not a lot known about it. What we do know is we have to stop the progression if Ksycee has any hope of regaining what she has lost & surviving this relentless disease.
We've learned the only true treatment is a hemispherectomy ~ the removal or disconnection of the left side of her brain. While this seems to be a terrifying surgery it does provide us with hope that one day we will get Kaycee back. The Kaycee that's inside fighting to get out to live the rest of her life.
With this thought in mind, Kaycee is scheduled for surgery on October 19th. This will not only require hospitalization it will also require a lengthy stay in an inpatient rehabilitation facility. In the midst of all of this we are trying to sell our 2-story house because of the stairs, they are no longer safe for her, and she won't be able to manuever the stairs well at all after surgery.
As you can guess, this is putting a huge financial burden on our family. Her father & I both work but have had to & will have to miss quite a bit of work as we fight to get our baby girl back. But we will fight no matter what. She was watching American Ninja Warrior with her dad the other day & she said she remembered playing that in the back yard & wants to do it again after surgery. We will get our girl back for her, for her sisters & for the rest of her family who love her. One day she will play American Ninja Warrior again.
Thank you for your help.
Kaycee's Keeper page
Kaycee's seizures have not only caused countless trips to the ER both by ambulance & life flight, the seizures have also stolen the vast majority of the mobility on the right side of her body. Watching our baby girl regress & not being able to do anything about it has been a nightmare.
After much testing it has been determined Kaycee has Rasmussen's Encephalitis. This is a very rare, autoimmune disease which has caused her body to attack the left side of her brain. There is said to be less than 500 diagnosed cases in the world right now. Since it is so rare there is not a lot known about it. What we do know is we have to stop the progression if Ksycee has any hope of regaining what she has lost & surviving this relentless disease.
We've learned the only true treatment is a hemispherectomy ~ the removal or disconnection of the left side of her brain. While this seems to be a terrifying surgery it does provide us with hope that one day we will get Kaycee back. The Kaycee that's inside fighting to get out to live the rest of her life.
With this thought in mind, Kaycee is scheduled for surgery on October 19th. This will not only require hospitalization it will also require a lengthy stay in an inpatient rehabilitation facility. In the midst of all of this we are trying to sell our 2-story house because of the stairs, they are no longer safe for her, and she won't be able to manuever the stairs well at all after surgery.
As you can guess, this is putting a huge financial burden on our family. Her father & I both work but have had to & will have to miss quite a bit of work as we fight to get our baby girl back. But we will fight no matter what. She was watching American Ninja Warrior with her dad the other day & she said she remembered playing that in the back yard & wants to do it again after surgery. We will get our girl back for her, for her sisters & for the rest of her family who love her. One day she will play American Ninja Warrior again.
Thank you for your help.
Kaycee's Keeper page