The story of Jennifer
Hi my name is jennifer and this story is about me and my daughter’s fight to keep her alive. I found out when i was 6mnths pregnant that something was wrong with my baby. I was sent to a high risk ob where they did a 3d ultrasound and i found out my daughter had both radius bones missing, her acc was missing, a cleft palate and she was extremely tiny. They tested her for all 190 diseases and she came back negative for all. They then told me my little girl had a disease called T.A.R syndrome and she was given a 20% chance to survive 2 hrs if she made it past that she would be bed ridden with no brain function. My daughter was born on dec.29th, 2009 by c-section. She was in the nicu for 28 days and then i got to bring her home. At 3 mnths old she had to have a trach put in bc she had a problem called trachiamalaysia which is where when u breath ur throat muscles collapse in because they are to weak and it cuts your airway off and she also had to have a gtube put in. When she was 9mnths old i found out she had severe hypercardio-myopathy and she would not survive the night. I then found out when she turned 3 yrs old that she was legally blind, deaf and the genetic doctor did more testing and found out she has roberts syndrome which is the sister syndrome to t.a.r syndrome. She had her trach removed when she was 4 1/2 yrs old which the doctors thought would never be possible. She is now 7 yrs old and despite all her health issues is an all happy well adjusted little girl. She goes to school and is in the 1st grade. I just found out however that she is now suffering from brain atrophy and is terminal. I thank every day i have her with me considering i should have only had her for 2 hrs