Fighting for Fierce Little Eleanor

On June 18,2019 my beautiful precious niece came into the world happy and healthy. Her parents, Michelle Rae Roark and Stephen Wilson were over the moon for their beautiful and seemingly healthy baby girl. A month later on July 19th, their lives were changed forever. Eleanor had what appeared to be a seizure and was rushed to the ER. After months of experiencing multiple seizures, ER visits,  hospital stays and poking and prodding of their sweet, angel baby, Michelle and Stephan were finally given an answer when they received the results of the genetic tests. ..Eleanor was diagnosed with a rare genetic disorder called CDKL5 which stands for cyclin-dependant kinase-like 5  (a gene located on the x chromosome). Most of the children affected by CDKL 5 disorder suffer from seizures that begin in the first few months of life . Most cannot walk, talk or feed themselves and many are confined to a wheel chair. Some may have Scoliosis, visual impairment, gastrointestinal difficulties, respiratory and sleep problems. Doctors have explained that much is unknown in regards to this disorder as there is little long term research being that CDKL5 was just discovered in 2004. Sadly there is no cure. Needless to say "The Roarkson's" have a long road ahead of them.  Currently Eleanor is on 4 seizure medications, receives a rescue medication when she has a seizure longer than 5 minutes (she's had to receive this multiple times), along with physical therapy and speech therapy which will intensify as she gets older.  Eleanor needs to be monitored 24-7 meaning Steve and Michelle function in shifts. Steve still works 5 days a week and Michelle tries to work from home a couple days a week. Sleep deprivation, doctor visits, hospital bills and drill weekends leaves their new "normal" nothing short of exhausting..and on top of it all expensive. With all of this Michelle and Steve remain devoted to continuing to fight for her to receive the best possible care. Both Steve and Michelle have fought for our country both having had multiple deployments over seas, now they are in the greatest fight of their life in fighting for a cure for Fierce Little  Eleanor. If you have ANY thing you can help spare to this loving, kind and most compassionate couple to assist with Eleanor's care your generosity would be appreciated beyond belief.