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

Tuesday, November 25, 2008 8:10 AM CST

Hello everyone
well it has been 5 years now since mattie has passed away,it has took me this long to get the courage i needed to visit this page again.it has been a long journey and the hardest thing i have ever had to do.but i have made it through.we miss mattie so much not a day goes by that we dont talk about her.thank u all so much for the prayers and the kind words.it meens more than u will ever know.we are all doing ok now and i dont know if u all know this but when mattie passed away i was pregnant.we had a beutiful lil girl on june 30 2004.we named her cassie marie grace east she is now 4 years old and her first day of school was last friday.needless to say i cried like a baby but she is lovin school.i thank god everyday for giving us cassie she has helped me more than she will ever know.bruce and the boys are all doing great.jody is 9 now and he is in 2nd grade hunter will graduate this year he wants to be a doctor.and lil bruce is now 18 he has a baby boy due next month we are all exited about the new baby and we cant wait to meet him.and as for me and bruce well i will just say we are still takin it one day at a time.we would love to hear how everyone is doing so feel free to write to me my address is still the same 123 jana cir stokesdale,nc 27357 we love u all and hope everyone is doing ok.
the east familey

Read Journal History

Hospital Information:

Patient Room: 5208

Duke Universty Hosptel
Erwin Rd
Durham N.C
9196815208

Links:

E-mail Author: langleya18@yahoo.com

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 15460 times.

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.