Batten’s Disease
October 23, 2009 by admin
Filed under Mommy Ramblings
This is a guest post by Brittany from The Greer Five.
To submit your own guest post please click here.
In childhood not only do you make best friends with the friends you go to school with, but your family. Especially and most particularly, your cousins. They are your age, you share the bond of a last name, knowing one another’s family and special moments that a normal friend can’t create nor understand. Such was the story of my younger years with my cousins. Three beautiful girls, Lauren, Paula and Taylor. We spent holidays, family get together and other non special event times — running through their house that was like a maze, dressing up dolls, using Paula and Taylor (they were the youngest) as our “kids” while Lauren and I were “moms”. We were four girls full of life, energy, sugar and spice and often times trouble. A picture hanging in almost every family members wall shows this. A picture of Lauren and I giving Paula and Taylor a bath in the bird bath in the backyard. Lauren and I were convinced when her mom (my aunt) came storming through the back door we were bound for the worst possible punishment. Just as quickly as that was a thought, my aunt snapped some pictures and went back inside smiling widely.
That moment, now a memory, forever captured in time in an image. A moment that seems light years away from today. A moment that every one of us wishes would come back.
Paula and Taylor were both diagnosed with Batten’s Disease. Lauren and I were swept back up into being children, confused by the frustration, anger, sadness and other emotions being held by the adults near us. The word seizure we heard all too often, but never understood. We only understood the fear in the voice saying it.
Right now there is no treatment, nor cure for this horrific disease. But that doesn’t mean there isn’t hope. “Hope is not a dream but a way of making dreams become reality.”
Paula and Taylor both lost their battle with Batten’s Disease. Our time together forever cherished and the pictures more than just a picture – but a priceless artifact of our childhood.
Go to Batten’s Disease Support And Research Association to learn more and how you can contribute in the awareness of this disease.
If you have a loved one or know someone suffering from this disease you can find support groups in your community or online like, Batten Disease Support Group.
Please also consider the Make A Wish Foundation – as they were there for cousins just as they could be for you.
(Paula Elizabeth Hudson 12/02/1989 – 9/03/2002) Her and my oldest daughter actually share their birthdays. Paula would have loved that.
(Taylor McClaine Hudson 3/19/1991 – 3/23/2005)
Ijust now saw this. I have that picture. Four great kids, forever in childhood,washcloth in Brit’s hands, Taylor sitting in the birdbath like a little nymph, all four doing what geat kids do – enjoying life. Late Infantile NCL doesn’t allow much enjoyment of life. But this photo, locked in time, locked in memory, is a testament to joy – and a tribute to two little girls now in the arms of their Lord.