Baby Evelyn's Medical Expenses

When it takes months to conceive, there is nothing more exciting than finding out that you are pregnant. Then the next few months are full of tests and check ups and fear as you await the results hoping everything is ok. After a 9 month emotional roller coaster, that amazing day comes when your baby decides to join the world. A hurricane of emotions strike as your baby is born. As you hold your new miracle and count all ten fingers and all ten toes, relief takes over because your newborn is perfect. This euphoria was short lived for my dear friend as within days she would receive some of the worst news any new parent could expect.   Baby Evelyn Deidesheimer was born February 12th at 9lb 1 oz and aside from a broken collar bone sustained at delivery, she seemed to be in perfect health. About a week later, Evie's parents received a call that her genetic testing returned positive for a rare condition, Pompe, which occurs about 1 in 40,000. There are 3 types of Pompe & further testing revealed she had Classic Infantile-Onset. While all cases horrible, this could be considered the worst.   Per the Cleveland Clinic "Patients with classic infantile-onset type rarely live past one year of age." https://my.clevelandclinic.org/health/diseases/15808-pompe-disease Because baby Evie’s test results were positive, she was able to start treatment earlier than other infants who wouldn’t have started treatment until after showing signs of the disease. Her doctors are hopeful, however baby Evie's body is already showing signs of her disease. It’s unclear what impact, if any, starting treatments earlier will have on her prognosis.     At approx 7 weeks old, little baby Evie has undergone many tests, sleep studies, surgery for a treatment port, chemotherapy, enzyme replacement therapy treatment, on oxygen 24 hours a day, as well as her broken collar bone (collar bone was complication from birth). She will have to continue her enzyme therapy & chemo treatments biweekly. Other symptoms of Pompe include: weak muscles, poor muscle tone, enlarged liver, failure to gain weight and grow at the expected rate (failure to thrive), trouble breathing, feeding problems, infections in the respiratory system, & problems with hearing.   Fearing the worst, Evelyn's parents are trying to stay positive and spend as much time together as a family. Carmella, Evie's older sister is only 2. Treatments are long and mom is unable to return to work because of the care she needs to provide. (As a mother, after hearing that the time you have with your newborn is limited I cant imagine being in a position where I need to choose caring for my child or returning to work to provide for my family.) Sadly, dad had to return to work.   Between living on half of their income, medical bills skyrocketing, endless doctor visits, & keeping a brave face for their older daughter, & I can’t imagine the financial & emotional stress of what they are going through. I am asking that you help where you can so what time they have is quality time together & not further darkened by the burden of financial stress.   All donations can only be accessed by Evie's parents, Eric & Ashley. Donations are being used for medical bills and supplement their lost income. Thank you for your help!