Layla's Light of Hope
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.
Our dad says, if Layla needs O + blood, he donates and would love to help her out. And if they are a match for bone marrow, if she needs it, he would love to help Layla out! God bless you sweetie! Stay strong in the Lord!
God bless you and your families! The Morris family is definitely keeping you all in our prayers
Does the Make A Wish foundation know of Layla's sickness???
We love you all! Charlene & Dennis
Please visit Layla's Light of Hope FB page to see her adventures!!
Please let Layla know that she and I share a very special person in our lives. My Grand Mother Abby David is her Great, Great Grandmother. Abby was a care giver and loved all of her children be they great or grand. She is watching over us even today. I know that you and your family will make the most of every precious moment. It is said that only special people are given special children. I pray that you are blessed with many happy days and lovely memories. Keep us apprised of the special memories and experience that you have together on this journey. With love and compassion, Karlene Beckman David Beams.
Thank you all again for your support. If you receive a "thank you" message, please know this is coming from the family and not me. They messages appear to have my name, but likely because I set it up. Thank you!
These figures (the comments, money, shares, etc) represent so much about the kindness and sincerity of the human race coupled with the positive side of social media! Incredible what God is doing here through Layla.
I was very touched by the words written here. I have a daughter of my own for whom I have many hopes and dreams. I just wanted to say I'm thinking of your family and wish you the sweetest of moments to share with this little girl who you clearly love so much.
I am a photographer and would love to donate my services to your sweet daughter. Bless her heart. Praying for you all.
I cant figure out how to contact you all :( - but heard that you needed a local photographer. I am in the atlanta are and would love to help. Msg me if you are interested www.andrea-wood.com/blog -has examples of work firstname.lastname@example.org blessings...
We love you Layla! Aunt KK, Graham, Hannah, & Jax!
Maria and Kerry - please know that we have been praying for Layla since Memaw first told us about her seizures. We'll continue to pray for a miracle for your beautiful, sweet angel. Cannot IMAGINE your pain but know we will praying for you all. Love to you all. Cheryl
Please use this section for your encouragement, comments, advice, etc. The family appreciates any and all things and any contribution will not go unrecognized!
Please use this section for any comments, words of encouragement, experiences, etc. nothing will go unrecognized and the family will be forever grateful!