Layla's Light of Hope

Layla Hollin Graham was born March 15, 2010. She was born beautiful and healthy and weighed over 8 lbs. Her father, Kerry Graham, her mother, Maria Mahaffey Graham and her proud big brother, Ethan "Maddux" Graham were grateful for their blessing and overjoyed to finally complete their little family. Layla was smart, energetic and a joy just as most babies are. She loved spending time with her big brother, Maddux and welcomed kisses from her family dog, Casey. Layla blossomed. She met her milestones and even exceeded some of them. If an animal made a noise, Layla knew it. She counted, she sang her ABC's, she played with her toys and she would cling to her mommy and daddy like your typical toddler. Around 2 years, Layla began showing signs of speech problems. While this seemed minor and easy to fix, tragedy struck when Layla experienced her first major seizure at the age of 3. After several seizures, multiple medications and several trips to the doctor, Layla was finally diagnosed with epilepsy. Our hopes grew stronger as we began planning for her future, knowing that someday she would grow out of the epilepsy. Sadly, her seizures worsened and we were counseled and advised to go for genetic testing to determine why Layla was having multiple types of seizures and why her progression began to slow. Her ABC's and 123's weren't as easy for her anymore. The natural progression of a toddler was missing and we were fighting for answers. We would have never expected or imagined the news we received on Thursday, October 9th, 2014. Our daughter; the princess, the future bride, the dancer, the ballerina, the soft ball player, the honor roll student, the light of her daddy's eyes, the queen of her household, the little sister, was diagnosed with a rare genetic disorder known as Late Infantile Batten's disease. Batten's disease is a rare, fatal autosomal recessive inherited disease of the nervous system and is so rare, it's estimated that the chances of Layla inheriting this particular mutation is 1:2,000,000,000. It's so rare that LESS THAN 500 people in the WORLD have this disease at any given time.

Layla has already become weaker. Her ability to walk is diminishing. Her nights are sometime restless, her frustration rises with every want or need that she's unable to express, she struggles with holding food and drinks BUT her eyes can still see and she can still experience things that little girls should experience. Unfortunately, her time is limited as she will lose her eyesight completely, she will lose her ability to walk and talk and she will become bedridden. Batten's disease takes over quickly and Layla's ability to experience the world will be taken away from her. We have very little time to fulfill our hopes and dreams with her. We have to pack a lifetime in to a couple of years or even months. Her life expectancy doesn't exceed 12 years old and we aren't sure how much of her life that she will be forced to live immobile and blind. There is no cure. There is no treatment. Our cure and treatment for her will be to spoil her beyond imagination, spend every minute of life living for her, making her as comfortable and as happy as possible and loving her as much as our hearts can hold.

Our immediate hope is that we are able to take Layla on trips and let her see big things. We want to explore as much of this earth with her as we can. We want her to know what mountains look like, what beaches all over the US feel like, what amusement parks have in common or how they differ, what it's like to sit in a movie theater, what a limo is, what a bus or a trolley or a tram is. Rivers, streams, lakes and seas are just a few of the things that we want to share with her. Witnessing wildlife, nature or just a butterfly in its habitat would be invaluable. We want to be able to take her to shows, sporting events with her big brother, or even just to eat her favorite steak dinner before being robbed of her ability to taste and chew. While some of these are all big hopes and dreams, the smaller dreams  matter and mean just as much.  It is our wish that we make memories as a family, that her big brother, Maddux, gets to embrace this experience and create memories that he will treasure forever. It is our hope that we are able to share with him new meanings of life, patience, empathy and unconditional love. We want his memories and time spent with his sister to  supercede any heartache, fear or frustration that he may experience through this journey. 

We are blessed with so many caring people and are beyond blessed with how many people want to help us. One dollar will help us. A prayer will help us. An inspiring comment or a recommendation will help us. We wanted a centralized location for any contribution, whether it be monetary or a quick note, so we decided on this page. Please share it as you see fit and lastly, please research and get to know this nasty, selfish, horrible disease known as Batten's.

Donations (0)

  • Patricia Bailey 
    • $10 
    • 12 mos
  • Vicki Custer 
    • $100 
    • 13 mos
  • Leatherman from The Village People 
    • $300 
    • 14 mos
  • Carrie Gollahon 
    • $100 
    • 18 mos
  • Matthew Clapp 
    • $1,000 
    • 26 mos

Organizer 

Kerry Graham 
Organizer
Woodstock, GA
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