Hope for Harper

On February 26th 2018 our lives were changed forever. We were told the one thing that EVERY parent fears. Doctors advised that our Non-stop Laughing, Smiling, Bubbly 3 year old Daughter, Harper is 1 of about a dozen children in the World currently diagnosed with an Extremely Rare Neurodegenerative Disease known as UBTF Disorder. The Doctor's told us that she will slowly lose all speech, cognitive and motor function eventually leaving her bedridden, with a G-Tube for food and Bipap to help her breathe... But we are strong believers in the miracles that God works and we know that he has blessed us with our Harper for a reason! On March 14th we went to see a Pediatric Specialist and Geneticist in UVA who then put us in Contact with a Neurologist/Geneticist who is actively working on a control/cure for this Rare Disorder. On April 9th we went to visit this Doctor in Memphis, Tennessee for evaluation, blood draws and biopsies. We got him everything he needed physically from us for further testing. He believes this is definitely curable and is actively working toward that goal! Funding is the biggest hurdle, his current grant funding ran out at the end of April and he advised that it will take around $150,000 to fund the research into 2019 when hopefully a large grant can be obtained and the medication will be ready to administer! :) We have also found another group of Doctors in Israel that are willing to research FDA approved Medications to this Disorder over the next two years and this will cost about $114,000 for 2 years to fund. So we hope to be able to assist them some with this venture. These are the only 2 places that a cure is being seeked medically in the world. Which is why it is so imperative that we raise the money and fund the research! ***If you know any businesses or companies that may be willing to donate directly to this research at the University of Memphis Please contact me!!! IT IS TAX DEDUCTIBLE!!!*** We know that with God ALL things are possible! We will be continuing Occupational, Physical and Speech Therapy 3 days a week keeping our Harper good and strong awaiting a cure. Any Donations collected will go directly to Medical Expenses for Harper and finding a cure to help ALL these precious Children!!!  We will keep you posted! If you feel led to do one yourself just message me here on GOFUNDME. We welcome anyone willing help head one off as we have been kept on our toes looking for help. We Thank each and every one of you from the bottom of our hearts for your Thoughts, Prayers, Cards,  Phone calls and Donations. Please continue Praying for Harper and feel free to Share!!! LOVE, Bryant, Casey, Harper and Lincoln 


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Bryant Gochenour 
Woodstock, VA
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