Lifting up Lydia

My name is Alicia Headrick, and I'm the proud, single mom to a beautiful 5 yr old little girl. Most of you who know me know I have a hard time asking for help, but I can no longer be shy when my daughter's life could be a little more comfortable if we only had the means. Lydia was born seemingly healthy, and continued to thrive daily. She met her milestones, and became quite the little runner from the time her feet hit the floor in the morning, til she laid her head to rest at night. She sang songs with me, enjoyed exploring the little world around her, and was not afraid of anything! Her smile was the brightest part of my day, and her sweet sleeping face kept me in awe for hours. She was perfect, and I thought our life would only get better with time. I imagined my little mini me would be the best she could be, and her fierce spirit would someday change this world, even after I was long gone. On May 22nd, 2015, she had her first known seizure. Within a few months time, more seizure types developed and she began full global developmental regression. Memory loss, abnormal movements, stuttering, non-stop seizures, and more and more doctor's appointments. April 2016 we received a diagnosis that was basically a death sentence for my little girl. Cln-2 Batten Disease, with a life expectancy of 6-12 yrs old. My little girl was dying right before my eyes. Before long, she was unable to walk, talk in sentences, feed herself, clothe herself, brush her teeth, sleep by herself, and had to go back into diapers. To say I was in shock is an understatement. My spirit was crushed the day of the diagnosis. I grieved her future. All the things I just knew she could accomplish, she would never even get the chance to try. How unfair for a child. Her body was failing her. Her brain was shrinking. This was our new normal. The changes kept happening, and they were all bad. There seemed to be nothing to look forward to anymore, except to hold her and look into her eyes not knowing how long I would have to do so. The light in her eyes slowly faded as the disease ran it's course, and I was left to watch helplessly, each day silently screaming inside that this could not be it. Not my baby. Not our life. This can't be real. But it is real, and giving up is not an option. I quit my job a few months after the diagnosis to begin traveling. I used my last income tax check to give us our first family vacation to Tybee Island beach, in Georgia. Then, the hospital put a rush on a Make a Wish trip for us, and we went to Pigeon Forge, Tn for a week. We then traveled back n forth to Columbus, Ohio til we were finally accepted into an experimental drug trial called "Enzyme Replacement Therapy", and after a shunt was surgically implanted into her brain, we began receiving the enzymes every 2 weeks scheduled life-long. The 8 hr drive from Tennessee to Ohio was taxing, and usually turned into up to 2 days. It was too much for her, and very hard on me, although I would drive across the country for her if need be. Luckily, the bdsra and volunteers, found ways to move us near the hospital, and November 2016 we became Ohio residents. We left our family and few friends down in Tennessee. Everything we had ever known, we left behind. Lydia still asks about her family every single day, and it's bittersweet, because at least she still remembers them. Although we have lost so much, we have gained so much. Lydia's treatment is prolonging her life, and is now the first fda approved treatment for batten disease. She will be 6 soon, and I have no doubt we will have many more birthdays to celebrate if all continues to go the way it has been. It's uncertain how many, because this treatment is not a cure. The disease has slowed, but not stopped. We still hope for a cure. I still struggle with haunting memories of my healthy child vs my disabled child. I wouldn't trade her for the world. She has lost so much, but in turn she still finds ways to smile, laugh, and teach. She teaches me things I would never have learned if I didnt have her as my hero. She's changed my perspective. She's my angel. If you've made it this far, thank you for reading a small part of our journey. Feel free to share. I'm including a wish list, and any donations will go towards providing for Lydia, for her happiness, comfort, and support. Thank you. ❤Lydia's Wish List❤ 1. Speedway gas cards 2. Gift cards- Wal-Mart, Visa, kroger's grocery store. 3. Size 7-8 girls clothes, gently used, if possible. Knee high socks for her to wear under her leg braces. 4. Diaper Wipes 5. $credit for Alicia and Lydia Headrick to Lind Automotive. Their number is [phone redacted] ( We are in need of an oil change and brake pads for the van, and a check up big time! ) 6. Sensory items, animal sounds, push button toy. We would love to be able to go home to Tennessee a couple times a year, and even visit new places and make new memories while we can. The future is uncertain. Thank you for your time. Please check out bdsra.org for more information on batten disease. Please keep my family in your thoughts and prayers, as we are facing even more hardships at this time. * Please private message me for an address* Sincerely, Ally and Lilly Headrick  paypal.me/AHeadrick