Love For Lexy

Love For Lexy

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Love For Lexy Update!

There has just been a huge breakthrough in a treatment strategy that could potentially SAVE MY LIFE!

    In 2012 my family was devastated to learn my diagnosis. I have infantile Alexander’s disease, a leukodystrophy. Leukodystrophy means ill white brain matter. It is very rare, progressive and terminal. The prognosis we were given is 6-10 years old. I am now 8 1/2 and in 3rd grade. AxD affects my central nervous system. Myelin is the protective covering that insulates the nerve fibers. AxD causes that covering to disintegrate, exposing the nerve fibers, disrupting the transmission of my nerve impulses to my body. I am unable to walk so I use a wheelchair. I can’t use words to communicate but I still have quite the personality!  I am developmentally delayed and have a g-tube for my many medicines and for any days that I may not be able to get all my calories in orally. I require thickened liquids and pureed food as I have a swallowing disorder that causes choking and causes thin liquids to go into my lungs and pool around my vocal chords. I am a very medically fragile and complex little girl. None of this stops my spunky little attitude and my happiness. I bring sunshine to the darkest of days and have impacted all who have had me in their life. I love music and my many friends and family.

       Mommy remembers asking a question during a webinar a few years back. She asked what the chances were for a cure for our children afflicted with AxD. The answer was, not in your child’s lifetime and honestly, probably not ever. That was gut wrenching and obviously tough words to swallow. My family still refused to lose hope and continued praying, A lot!

      We enrolled in a research study at CHOP (Children’s Hospital of Philadelphia). The AxD community has just received some HUGE news. They have discovered a treatment strategy using mice with AxD. Not only did this treatment stop AxD in the mice but the mice models actually improved!! This has brought so much hope to our family and all those affected by this awful disease. We are so close to human clinical trials!

With that being said, we are turning to the community to help us with the financial burdens. We need help to continue to travel back and forth to CHOP as well as other medical trips to Boston and Dartmouth. We need to get to CHOP for the ongoing research that will help get a treatment approved by the FDA. It will also help to make sure I’m able to get the treatment as soon as it is ready for the intense human clinical trials. If you are able to help us financially and/or in prayer, my family and I will be eternally grateful. You could be a part in saving my life!! We thank you from the bottom of our hearts! Follow my journey on Facebook by liking “Love for Lexy”

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