Kayla is and always has been a miracle in the making!

I was told it was 99.9 percent likely that I would never carry a child, her father and I was, needless to say, shocked and excited to hear that we were going to have a baby. Kayla was born, we thought, healthy and full of life. She loved life, always wearing a smile and never meeting a stranger.

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!

4 thoughts on “Only Thirteen Years Old and Battling BVVLS, Kayla Never Ceases to Amaze”

  1. Nana says:

    Thats our girl. The chid that refuses to give up if she wants it badly enough. For this reason and knowing God helps us have miracles,,,,we aint giving up. Aint that right Kayla Lynn?

  2. william Parker says:

    Hi I am willia 62 I have had BVVLS for 20 years 2 sisters died from it despite having most of Kayla problems I live alonje and do most things myself don’t give well done

    XXx WILLIAM

  3. Kara says:

    My son is 3 years old and they just told us today that they r pretty sure he has this he is going down hill fast as well plz any parents that can help me just understand some.more feel free to add me on fb my name is Kara bourne

  4. Kara says:

    Hey this is Kara bourne would u plz contact me my son is going threw this stuff and they just called us today and told us this is what they think it is

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