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“We just looked at each other and both of us started to sob,” Catrina recalled. Doctors initially thought it was an isolated event but scheduled testing a week later to be sure. While waiting in her hospital room, Charlee froze and stared at the wall, then fell to the ground. “That was the first seizure I had seen. I broke down and thought, ‘This isn’t happening,’” ” Catrina recalled. For six months they treated Charlee for epilepsy. But when she started tripping on the stairs and having recurrent tremors and shakes, the family renewed testing and discovered a part of her brain was shrinking.
Charlee started having drop, or atonic, seizures, sometimes as many as 200 or 500 a day, “She would just cry for hours at a how to stand on your toes without pointe shoes time, She couldn’t communicate or tell us if it hurt but I just know she was in pain,” Catrina said, The family tried numerous medicines and a high-fat, ketogenic diet, recommended for nearly all children with seizures, Because doctors had not yet diagnosed Charlee, they didn’t realize fats were the enemy, “She was potty trained but days after starting the diet was wetting her pants,” Catrina said, “We thought, ‘Gosh this seems like it’s making her worse,’ but we felt it was our last hope.”..
Charlee’s eye doctor first noticed the retinal formations that led to her genetically confirmed diagnosis of Batten disease 21 months after her first seizure. By then Charlee could no longer walk or talk and was nearly blind. For her the worst part was over — all the blood tests, spinal taps, skin biopsies and brain monitoring. “She never seemed like she knew something serious was going on because her brain was more like a baby’s by the time it got really bad. She never feared losing her life, which is a blessing I guess,” Catrina said. “In a way it feels like we lost her two years ago.”.
Still, the family resolved to make her final moments count, Last April the Make-A-Wish Foundation flew them to Disney World, “She loved the thrill ride, Splash Mountain, because even though she couldn’t see, she could feel the motion in her tummy, She was grinning the whole time,” Catrina said, Family and friends have an open invitation to drop by the house, “I just wanted them to not have regrets and to be able to come and hold her and say their how to stand on your toes without pointe shoes goodbyes,” she said..
Neighbors and members of their LDS church — all “Charlee’s Angels” — have donated studio-quality family portraits, an oil painting of Charlee before the seizures, therapeutic massages and food. Then, in February, she stopped eating and had to be admitted to the hospital. “Her vitals have declined in the last couple of weeks,” reads a Feb. 27 Facebook post by Catrina. “Jeff and I have had an emotional week. We’ve had a lot of hard talks and hard decisions to make.”.
Charlee worsened, Her brain stopped communicating with her body and now all the family can do is keep her sedated and comfortable, On March 4 she smiled when told she could leave the hospital and go home, She still perks up when she hears her mom’s voice, A favorite plush bear that sings the ABC’s when you squeeze can coax a smile, “She’s an amazing little girl,” Catrina said, Last Thursday the family summoned how to stand on your toes without pointe shoes close friends and relatives, Charlee’s breathing had become shallow, She was gasping for air, looking up at the ceiling and reaching toward something, “I put the oxygen on her and called my husband and said, ‘You have to come home, I think we’re losing her.’” ”..
She has held on, though, and on Monday lay on the couch, wrapped in her favorite purple blanket with her siblings as they watched TV and played video games. If she needs oxygen again “we won’t be giving it to her,” Catrina said through tears. She has been honest with her children about Charlee’s prognosis but tries to keep “things light.”. “I try to be strong and stuff but it’s hard. You shouldn’t have to bury your baby,” she said. “Parents talk of a lifetime of epilepsy; I would take epilepsy in a heartbeat. It’s all devastating, but to watch your child go from normal to lifeless in a manner of months … there are no words.”.
The Murphy family organizes the annual event in honor of the donor’s family for a gift that saved the life of her son, Kevin, six years ago, Kevin, then 11, received a heart transplant at Lucile Packard Children’s Hospital at Stanford, Many came to donate blood, said Diana, but, “they also came to show their love and support for Kevin, (now a junior at California High School) our family or in honor of someone dear how to stand on your toes without pointe shoes to them who has benefitted from donated blood.” It was an opportunity to pay it forward, said Diana, who added, “Kindness and paying it forward really is a domino effect.”..