Miracles for Milana

Milana was born on a rainy Halloween night and in her 11 short years she has proven to be full of magic and mystery.
Milana had no known medical diagnosis to explain all her illnesses until just this year they found a rare genetic disorder. She is only one of two children known in the US to have the specific condition. She had a typical birth and even passed her newborn hearing test but at 6 months old we discovered she is legally blind and also needed hearing aides.  
As she grows she is not able to walk or talk or eat by mouth. When she was a year old she had her first seizure and has had one almost every day since. Medications have not worked for her seizures at all. She is at risk for sudden epileptic death because of her nighttime epilepsy and must sleep with mom or dad always. 
At 2 years old she suddenly started throwing up violently every day. She stopped eating by mouth and now relies on a g- tube for all her food and water. She still throws up every day and struggles to keep her feedings down.
Milana also has inflammation in her GI tract with no known cause.  She has developed Cyclical Vomiting Syndrome where her body rejects all food and water for up to two weeks at a time. She was hospitalized 3 times this year for just this issue. Milana also has high blood pressure as one of her kidneys has a portion that does not work. She is considered medically fragile /complex and is not stable enough to attend school. 
 Milana also has a bone disease that makes her very fragile - her bones are like glass. She breaks very easily.  She has broken a toe and also her femur. She wears ankle and leg braces as well as a hard constricting spine brace for a severe curve in her spine. She will need both spine surgery and hip surgery. Our family travels from NY to MA to Boston children's hospital for all her extensive specialists and hospital stays.
On her 9 th birthday she was in the Pediatric Intensive care unit and we almost lost her to a serious blood infection and septic shock. She is on long term antibiotics to try to prevent infections. 
Milana is in a wheelchair and needs a handicapped accessible van. She is getting heavy to carry in and out of the car and she is so fragile if she gets bumped she can break bones easily.  Also as she grows her wheelchair is becoming too big to fit in the trunk of our van. 
Milana’s Dad is a special education teacher. Milanas Mama is her primary caretaker and as a result is unable to work. Milana requires care 24/7 and has many many medical expenses that are not covered by insurance. She has 3 siblings that she loves very much. Milana and her family live in a house with her Papa and Uncle who is autistic - as we  cannot afford a home at this time. Her Nonna - Linda, had planned on fundraising for Milana but she passed very suddenly from a rare aggressive cancer.
We are fundraising for all costs associated with Milana’s care. Also for medical expenses that are not covered by insurance. Often during hospital stays Dad loses income and we have so many unplanned  expenses. We use our own money towards many appointments, therapies, treatments,  supplements, medications and equipment that are not covered by insurance for Milana. 

Milana will soon have major surgery on her spine this year. It is an estimated stay of 3 or 4 weeks in the hospital in Boston and a 3 month recovery at home. This hospital is very high risk for her. It will be a tough time for our whole family. 
What makes Milana happiest is to be with her family.  She also loves to feel warm breezes and to hear music. On the very few and special occasions when we are able to get her near the ocean she loves loves the feel of the wind and the waves. 
Thank you so much for reading about our beautiful Milana. We appreciate any prayers you can send our family and we wish you all so much love and light!