Hope for Harlee, Rare PDCD Disease

I'm setting this page up to help raise money to buy medical equipment for my niece Harlee Burns. Just a few items such as a cub pediatric crib stretcher, tomato sitting chair, feeding equipment, etc....
My family has known something was seriously wrong with Harlee since the day she was born but did not get her actual diagnosis of Pyruvate Dehydrogenase Deficiency until she was 4 months old. This disease has absolutely no cure and high fatality rate before end of childhood. She has literally spent most of your life at hospitals or doctor offices. Whether it's for a medical check up that is required or at times being rushed to the hospital in private jet. Yes, a private jet! Not because she is spoiled (well she is spoiled) but the hospital requires her to be transported by jet instead of ambulance when transferring hospitals due to distance and severity of her disease. That's the quickest way to get her to the team of doctors that specialize in her disease. Her disease is so rare that only 2 hospitals in the state of Texas are trained to care for her. In January Harlee began the journey of the Ketogenic diet, without it doctors said she probably wouldn't see her first birthday. This diet is typically used to help kids for epilepsy but Harlee needs it to produce energy for her cells. If you don't produce energy then your cells can't grow and thrive then your organs will begin to shut down and deteriorate, ultimately costing her life. As a mother myself, I couldn't even begin to imagine getting news like that. When my sister told me about her diagnosis it shattered my heart in a million pieces. Harlee is so precious, beautiful, innocent and perfect in her own little way. She has 3 older brothers who have sacrificed time away from her since she was born due to this awful disease. Everyone that has followed my nieces story so far has just seen a glimpse of what she goes through everyday. She literally fights for her life every single day. With the equipment she is needing, not only will it help my sister to better care for her but it will increase the quality of life for Harlee. For instance Harlee's reflux is so sever she has to be at a 45 degree angle when she sleeps and has a hose draining her stomach acid 24 hrs a day so she won't spit it up and make her vomit blood. That's just one of the many reasons she needs the cub pediatric crib stretcher. Harlee also has extremly poor muscle tone from her disease, so bad that even at 7 months old she can't hold her head up or roll over. She is basically still a newborn. She is blind and deaf but yet finds ways to show happiness even though she has never smiled socially. She needs 24 hour round the clock care so these items are just the beginning of many more she will need in her life. Her disease is so rare that research is limited and it kills more children then cancer.  Harlee looks like a perfectly healthy baby but that is the scary part about her disease. Her brain can tell her anytime to stop breathing and it has on many occasions. Any donation you could possibly make will help tremendously! If your not able to donate, all I ask is for your continued support and prayers for Harlee and my family. Your thoughts, positive comments, warm wishes and prayers that my sister gets daily from everyone means so much to all of us! If you would like to follow Harlee's journey you can like her Facebook page "Hope for Harlee Burns"
#prayersforharlee
#hopeforharlee