Blakely 's Page

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Blakely 's Story

This is Blakely's story. She would tell you herself, but she cannot. She is my heart, and I am her voice. Our journey started on January 27th, 2011 when our beautiful baby girl came into this world. We named her Blakely Layne — She was perfect and instantly stole our hearts! Her first year was typical. She loved flipping through books, pretending to read, playing peek-a-boo, and babbling. At 10 months, she learned to crawl, and boy did she love being on the move! At 15 months, however, we became concerned that she wasn’t attempting to walk. Her doctors told us not to worry. Looking back, we realize Blake’s regression began here. All delays were subtle, and we could easily justify and “explain them away”. In reality, she stopped picking up books, she stopped using her left hand, and she resisted attempts to stand. She was fatigued and irritable, and I could see the frustration in her eyes, almost as if to say “help me”. I remember one day, I handed her a cup, and she wouldn’t take it. She looked at the cup, and looked at me, as if her body did not know what to do. She began walking at 22 months. We were thrilled, but also noticed she had an unusual gait and her balance was very unsteady. She fell often and couldn't quite catch herself — what was happening to our baby?

We continued to fight, research, question, and visit multiple doctors. At age 2 1/2, just two months before her sister’s due date, we asked for an MRI to begin ruling things out. Unfortunately, her scan revealed what we call enemy #1; She had something called a Chiari Malformation - her lower brain was growing into her spinal chord putting dangerous pressure on her brain stem. Our baby girl needed a brain surgery to correct the issue. We were sick, but hopeful that once corrected, we’d have our healthy and able little girl back. Just a month after her sister, Andi Mac, came into this world, we sent our other baby back for a neurosurgery. Recovery was painful and very difficult. Blakely’s only improving symptom was her balance - everything else continued to worsen. We were forced to keep searching and questioning.

We started a rigorous biomedical diet and supplement regimen. We continued her many weekly therapies, and we even purchased a hyperbaric oxygen chamber for in-home treatments. But on July 7th, 2014, our world was forever changed, when we met enemy #2 - a most formidable and dreaded foe. On 7.7.14, genetic testing confirmed that our beautiful, sweet girl of 3 1/2 years had Rett Syndrome. Rett Syndrome is a terrible thing. It sneaks up on you. The word they use on websites is “insidious”. Rett Syndrome affects 1 in 10,000 girls. It is described as Parkinson's, Autism, Apraxia, and Epilepsy all rolled into one. Most Rett girls never speak, and have very limited use of their hands. Half are confined to wheel chairs. Rett girls experience life-long motor skill issues, heart arrhythmias, breathing irregularity, scoliosis, digestive problems, and seizures. Severity ranges and is hard to predict, but Rett girls never live independently. But, they are extremely intelligent and aware! Blake knows exactly what is going on around her, but has no voice to prove it, and she is trapped in a body that she can hardly control.

Blake is an extremely loving, vivacious and sweet little girl, but she is also a fighter! She will work hard, we will work hard and we will hold onto hope. We hope in our God, and we hope in a CURE on this side of heaven. We will do our part to raise awareness for Rett research and treatments, while making sure Blake is the best Blake she can be mentally, physically, spiritually. We’ll fight it’s effects every day, but Rett will not define us, and we will fight for it not to define our sweet, loving, awesome, amazing and intelligent Blake!