Medical Help for Joey

My daughter is almost 8 years old. Since she was born almost 2 months early she has had challenges. At the age of 3 she started having the worst nosebleeds I have ever seen. Fast forward to March of 2016 where 1 visit with her pediatric physician has turned into her seeing 5 specialist (as of now). She is seeing hematology (blood), cardiology (heart), otolaryngology (ears, nose and throat), genetics & dysmorphology (inherited gene issues), and ophthalmology . As of today we found out that she has a genetic bleeding disorder (hemophilia) called storage pool platelet disorder and will now also start seeing hemophilia Dr's. We are at a stand still in her medical progress and diagnosis for 3 reasons. #1 her required insurance deductible is $3,000. #2 her future and extremely necessary testing will not be covered unless this is payed. #3 the only thing to help her stop bleeding right now is a medication called Amicar. On March 11th of 2016 I had to take unpaid fmla from work and although I am supposed to return in June most likely that will not happen due to her multiple Dr's appointment a month. Every month we drive over 2 hours to Rady Children's Hospital in San diego 5-6+ times a month and we'll my employer is not understanding enough to allow me that time off (hence the unpaid leave). I have over 10,000 in medical bills on top of this...but getting her the medication is ALL we care about. We are out of options right now or I wouldn't even have considered making one of these. Please look into your heart and help my baby girl if you can. Prayers are also always in need and appreciated. - thank you