Jordan's Journey Chapter 2

JORDAN'S JOURNEY CHAPTER 2

Jordans Journey began November 13th 2008. He was born 37 weeks gestation considered full term, weighing 3 lbs 3 ounces. Immediately after he was facing low chances at surviving. Following, Inner Uterine Growth Restriction/Retardation,severly low amniotic fluid which is why he could not grow along with a  Right thalmic brain bleed that eventually led to seizures and the beginning of neurological issues. As the hours went on more and more was being discovered.  Failure to thrive, which causes a complete no hunger drive and he did not want to eat. ROP, Retenopathy of prematurity. Jordan had the vision of a 50 year old man at eight months old wearing glasses caused by ROP. Also, he has a bleeding disorder called Von Willabrands Diease. His blood does not clot. All of these are still issues he faces everyday. 
Few months later he was diagnosed with Hypertrophic Cardiomyopathy with a right diastolic dysfunction and was put at SEVERE RISKS for HEART FAILURE and or SUDDEN DEATH at ANY GIVEN TIME. This is only caused through a GENETIC MUTATION AN HEREDITARY syndrome or disease.  2010,
he was in and out of the hospital a few times for poor weight gain and heart complications. By this time he has had over 20,000 GENETIC TESTS  done from Childrens Hospital of Milwaukee, Wisconsin to Minesota, Mayo Clinic and still NO ANSWERS.
In 2011,  Jordan went into HEART FAILURE and his family was told to say their GOODBYES. After about one month in the hospital, he was stronger and no longer in heart failure. Since then, Jordan has gone through many tests and procedures, but still no answers.  Among other abdnormatlities, today Jordan is 8 years old and struggles severly with poor weight gain. 

 We need a diagnosis for his unknown genetic disorder(s) that has made my lil man battle life on a daily. Doctors said he wouldnt walk or talk. They said he wouldnt live past 7yrs old hes going on 9 yrs old. Mistaken often for 5yrs old and under. He has a severe heart condition that threatens his life everyday. He has a gtube due to failure to thrive a.k.a. no hunger drive. This is why he has the g-tube. Hes been 32lbs for 3yrs straight . He has many special needs and we need a cure . Only way to get a cure is if he has a genetic diagnosis. The one TEST doctors say he needs is not covered through his insurance. So here we are. SUPPORT JORDANS FIGHT AND HELP US GET ANSWERS! #TEAMJORDAN ITS TIME !
SUPPORT GENETIC DIAGNOSIS #4ACURE