mattie rose east

Hello everyone I am miss Mattie, or as my aunt kathy says miss Angel Rose.I am 20 months and I have Hurler Syndrome. I was born Febury 15 2002 at 8:02 am I was in resptory distress when I was born so I was transported to U.N.C in Chapel Hill n.c I stayed there for 9 days and then went home. I was home for 2 months when I coded. My Mommy done C.P.R on me and I started breathing again. I went to the hospitl in a ambulance and they told my mommy I had a respatory infectin.They gave me some meds and sent me home.After that I coded 5 more times my mommy brought me back every time,but the doctors did not know what was wrong. In May of 2002 the doctors came to the conclusin that I had seaver acid reflux disease.I had a Nissan or stomach wrap and a feeding tube put in. On may 9 2002 I was on life support for 3days but I pulled through,and went home a week later. Then in Jully of 2002 coded again.My mommy brought me back again. In march of 2003 I was dignosed with MPS 1 Or Hurler Syndrome.Wich is a rare genetic storage disorder.Most hurlers kids dont live past 10 years old.I had a stem cell bone marrow transplant on september 5 2003 at Duke University Hosptile in Durham N.C by Joan Kurtsburge. I am still on the B.M.T unit,but hope to go home soon.

Journal

Wednesday, November 26, 2003 11:20 AM CST

Hey everyone I guss you know by now my baby girl is gone. She passed away on november 14 at 12:03 am. The docters told us that matties acid level in her body was high and that all matties organs would shut down including her brain. So we took her off the ventalater at 9:00pm and she passed at 12:03am. She died veary peacfully, and was in no pain. but I miss her so much.We are just taking it one day at a time. We thank you all for your prayers and support. and please cherish every miniet you have with your kids and thank god every day for them. We love you all and god bless you all.

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Hospital Information:

Patient Room: 5208

Duke Universty Hosptel
Erwin Rd
Durham N.C
9196815208

Email address  : mattierose_770@hotmail.com

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