Around the age of four years old, Kayla began complaining of pain in her extremities. Doctors dismissed this as growing pains, so we thought nothing of it. I also noticed that she could not maneuver scissors, she could not pass a hearing test, she screamed frantically if put on a swing and she could not skip or jump over an object while standing in place. Again, these dilemmas were discarded on a note of “she’ll grow out of this.”
At the age of five years old, Kayla came home complaining of her hands shaking. Just out of the blue, no reason for it. This was in August of 2005.
By March of 2006, she could no longer feed herself. The muscles in her little hands deteriorated that quickly. This disorder worked very quickly on her little body and soon she could not do anything with her upper extremities. Kayla was undiagnosed for eight years.
She is now 13 years old and uses her feet to do anything she needs to do, such as completing homework, playing on an Xbox, drawing and surfing the web.
Just recently it was confirmed that Kayla had Brown-Vialetto-Van Laere syndrome (BVVLS). The National Institutes of Health (NIH) along with CCH has worked relentlessly in finding out the cause. They have started her on a B2 vitamin and CoQ10 supplement treatment plan that we are very excited to be a part of.
Considering the odds she has against her, she has never allowed this disease to bring her spirits down. Kayla always finds a way to amaze me!
This is an update on my amazing daughter, Kayla, as of May 23, 2013:
Kayla began a B2 protocol in February 2013. Since the start of this regimen, Kayla has amazed me even more. This B2 protocol seems to be a simple but effective treatment to keep her stable. There’s no improvement to call it a cure. BUT her muscles seem to be changing in strength for the better, which gives us a glimmer of HOPE! :} As always, her spirits are running high, always giving the ones around her JOY! Running on FAITH, this child’s hope and love never ceases to AMAZE ME! We will update again in three to six months with hopefully some even more exciting news!
God bless from our family to yours!