Ryleighs MITO warrior funds

Hi, My name is Amber Martin. I'm baby Ryleighs mother. Ryleigh was born on February 10th 2016. She is 4 years old. When Ryleigh was still in utero, the doctors found through ultrasound that my daughter had parts of her brain missing. Her father, John and I were devastated and very concerned for her. After Ryleigh was born she had the hardest time eating and swallowing. After two months of testing and hard times in children's hospital (which we lived at) and had weekly visits, she was diagnosed with Pyruvate dehydrogenase deficiency. A rare MITOCHONDRIAL DISEASE. Most don't survive out of the nursery from this disease and there is NOT a very high life expectancy. There is NO cure! It causes her to sleep alot to save up enough energy to keep her major organs to function. Imagine a house running on a double AA battery. Yea, it's not going to last long. that is mitochondrial disease. It's deteriorating her energy cells in her body (which uses up 90% of your bodies energy) and she can't ever replenish or fix them.  We need a cure fast! She has good and bad days. Lately more bad than good. Ryleighs breathing and seizure activity is increasing at an extreme pace. The doctors have now ordered her a pulsox for home to monitor her.  We have frequent stays and go to children's hospital at Least once a week. She goes every 6 months for a sleep study and we have to travel very far for her special diet the keto clinic every other month. She's missing her corpus collosum, and both sides of her cerebellum are very underdeveloped in her brain. Her motor skills are going to be very limited and already are. Even at 3 years of age she still cannot hold herself up or sit on her own. She can hold her head for a couple seconds but that's it. At three months old she got a g tube put in and can not eat anything by mouth Due to risks of aspiration. She has no sucking and swallowing coordination (which is really bad lately) so we suction her when needed. Her seizure activity causes her to not swallow as well. She has started new episode like seizure activity which is like a twitching also with breathing problems.  She had the salivary gland removal surgery and they only removed 2 of the 4 glands and it helped with production of saliva. This was her 7th surgery. She was put on a ketogenic diet (at around 3 months) which is only high fat and protien. She cannot have any type of sugar or carbs. Her body cannot break them down. IT IS DEADLY FOR HER. She has a hard time growing from this and her head, feet and hands are about the same size as they were at birth. She also has failure to thrive, colpocephaly, craniosynostosis, cerebral palsy, severe sleep apnea ( both awake and asleep), submucous cleft palate, seizures and partially blind (optic nerve hypoplasia) and deaf.  Ryleigh wears hearing aids, arm splints, neck brace, core brace and foot braces. She also has a mediport on her rib cage for easy IV access. She takes about 20 life sustaining medications a day! Lately she has been having breathing problems and the last surgery she had has caused more problems than good for her. She has had 7 or 8 surgeries so far now and still has others in the near and far future. Recently the doctors have noticed a big curvature of her spine and reffered us to the orthopedic surgeon since it could be impacting her lungs and breathing. John and I are having financial troubles and need a new handicapped accessible home, and equipments etc for Ryleigh and our family. We have two older boys Mitchell and Draake. They love and care for her so much. I lost my job due to having to take off too much time to care for my baby girl. Eventually we are going to need the new home because of the many stairs into the house and up to her bedroom is very difficult, especially trying to carry all the equipment up and down as well as her. Its also very hard to get some things the insurance companies will not help cover. Hence the reason she may now be getting spinal surgery. We would be greatly appreciative of any help we can get. Even sharing this campaign helps a great deal. It's been very hard as we care for her 24/7. UPCOMING tests include two MRIs, one for the imaging one for the chemical reactions in the brain, adjusting the settings for her bi pap and possible Tracheotomy talk. I WILL POST UPDATES AS WE GO THROUGH EACH PHASE OF THIS DISEASE PROGRESSION. GO TO THE UPDATE SECTION TO LEARN MORE.   To read more on this specific disease please visit www.umdf.org. If you have any advice or anything you know concerning housing, or this disease etc please feel free to leave a message for me! Thank you all for your support, sharing and prayers!