Emily C. - Quilt Finished in 2009
Born: June  2, 1997
Illness: Battens Disease (Juvenile), Blindness (2-12-02) Seizures (6-30-06)

A Thank You From Emily's Family!
2/17/09

Finally picked it up today. WOW is all I can say!! Its huge. I was telling her all the different animals on it and where they came from. She's taking it in for show and tell Friday! Just beautiful! I love the personalized letter too. If you ever need one Brailled let me know. Right now she has all of her mermaids and sea animals gathered around the quilt watching Little Mermaid.

Thanks so much!
Becky and Emily

Emily C.'s Story
Written by Emily's mom Becky in May 2008

Emily is a miracle. After trying for many years to have a child and numerous miscarriages, we were finally blessed with the most amazing miracle! All of those years longing for a child and suffering the loss of so many children before I even got to hold them and get to know them, I finally have Emily!!

Emily hit all of the 'normal' milestones. She knew 20 letters of the alphabet by 18 mos and by 2 she knew all of her letters, counting 1-10, basic colors and shapes. When I checked out preschools, I asked what they taught and found that all of the stuff the preschools taught were things that Emily knew long before she turned 3.

Somewhere between 3 and 4 Emily began struggling in areas that she never did before. Doing things that she never had done before. Nose to the tv, not picking up her toys, having to be escorted off of the playground at preschool and so on. I figured that is was the terrible twos, just a couple years late. To be sure I talked to the doctor and we even had her eyes checked. She only had problems with depth perception. The doctor said that its nothing to worry about, yet. Other parents complained of the same things about their children. Based on what everyone said, Emily sounded "normal", but alarms were going off in my head and they had been for a while.

February 2002 the preschool teacher told me that Emily couldn't see the difference between a 'B' and a 'D'. Knowing that she's known her alphabet since she was a toddler, the teacher told me right away. We had her at the eye doctor a few days later. Emily is legally blind and is losing her eyesight. We got a 2nd opinion the next day from a retinal doctor. She was diagnosed with Retinitis Pigmentosa. We had Emily at UCLA to get tests done two months later. She was one month from turning five. Long story short, UCLA was of no help. Three years, three trips, and thousands of dollars later, we heard nothing from them. We were no closer to knowing what happened and after three years of researching on my own, UCLA and all of the other doctors diagnosis made no sense at all. The signs and symptoms didn't match up with any of the hundreds of versions of Retinitis Pigmentosa.

Emily learned Braille and how to use a cane. I would never see my child run after a ball. She would never see her children, the Grand Canyon, would she remember what I looked like? No one is ever prepared for a child with "special needs". Over time, we did it, we got good at discribing movies at the theater, she relearned how to dress herself (try it sometime with your eyes closed!), how to put toothpaste on a toothbrush, all of the things that we all take for granted. I even learned Braille so that I could help her with homework.

By the end of first grade, Emily was struggling again. Forgetful, mood changes, attention issues, socially she wasn't where her peers were. By third grade the struggles were even worse. We had her repeat third grade, but by that point she didn't even have any friends at her grade level. She wanted to play with 5-7 year olds and her homework went from 30 minutes to 3-4 hours daily. Don't even get me started on the fights with the school!!

June 2006, Emily had her first seizure. I can't even describe how scared I was. I didn't know what was happening. I thought she was dying.

January 2007, after six months, numerous medical tests, and four seizure meds, and two neurologists, we finally had her seizures under control. I went back to the genetisist that we had seen a year earlier to try to get the answers that UCLA didn't give us. He referred us to another retinal specialist. The retinal doctor told us that based on the suspicious way Emily lost her vision and the recent seizures he suspected Battens Disease. I had remembered seeing Battens in my years of research, but didn't remember much about it. The look on the doctors face was telling me it wasn't good. I told him to just get to the point and tell me what we could be going on. He said it is terminal. A neurological disease that takes vision, causes short term memory loss, mood changes, seizures, and eventually loss of ability to walk, talk, eat, etc...

March 7, 2007, we met with the neurologist and the genetisist. The blood work came back and confirmed Battens. I would never see my daughter picking a prom dress, graduate high school, go to college, get married, hold her first child. The baby I tried to have for years, love more than life... is dying. A slow crippling death. Each day losing more of herself and her ability to do the things she loves.