Welcome to our daughter, Sydnee's web page. It has been provided to inform family, friends, and other MPS families on the events that have happened in our life since Sydnee's diagnosis of MPS 1 - Hurler Syndrome. Sydnee was born 3-25-99 and diagnosed with Hurlers on 6-15-00 after months of snotty noses and ear infections. 3 months later we were at Cook Children's Hospital in Ft. Worth getting ready for a Bone Marrow Transplant. It all happened very fast - boom, boom, boom! The BMT actually went very well considering. She was their "poster child". The doctor's were very pleased. She was and is 100% donor cells with plenty of the enzyme she was missing! It wasn't all fun and games as we later realized. About a year after her BMT she did develope some life-threatning problems from her transplant. She was diagnosed with EBV - Epstein Barr Virus . 1st in her spleen and lymphnodes and then in her brain. The lesions in her brain caused stroke-like symptoms on her entire right side. She lost her speech and she was unable to walk and use her right arm and hand. After months of being involved in some research programs (for EBV in the brain) and therapy she is currently on the way to recovery. Her speech is almost up-to-par but we still have a lot of work to do with her right hand. Her left hand is now her dominant one which is taken a long time for her to get use to. Her balance is still off a bit but nothing compared to how it was. It is hard for us to tell how much of her delay is from the Hurlers and how much is from the EBV. We just want families to realize there are a lot of things to think about when deciding upon a course of action for your MPS child. It is not that easy as some of the stories you read or hear about. There are very serious risks involved! But we don't regret anything. We would still choose to do a BMT even with all we know now. She is alive and happy as can be. We wouldn't change that for anything!
PLEASE CONSIDER BEING A LIVING DONOR WITH YOUR LOCAL BLOOD BANK.

Journal

Tuesday, September 11, 2007 2:35 PM CDT

Well, it is hard to believe that it is almost Sydnee's 7 year Post BMT Anniversary! Whew!!! It seems like it was just yesterday!

Let's see, what is going on with our family these days????
Well, the big event this past summer was Sydnee's Make-A- Wish being granted. The 4 of us flew to Orlando and spent 5 days and 4 nights aboard the Disney Cruise ship! We had a great time! Sydnee received lots of special treatment and goodies. The kids loved meeting all of the characters and getting their autographs. Sydnee's favorite part was swimming with the sting-rays (Andrew wasn't too thrilled with that adventure) and getting her hair braided at the Disney Island.
We'd love to do it again but daddy wasn't too thrilled with the whole boat ride. I guess we will give him a couple of years to recoup!

School started at the end of August with Sydnee going into 2nd and Andrew into 1st! We sure are glad they enjoy school. So far so good!
We finally put Sydnee back in dance after a 2 year hiatus! She loves it! She is taking tap, jazz and ballet. Can't wait for the recital next spring.
She is still getting IVIG at Texas Children's Hospital but now it's every 6 weeks, instead of every 4. She is also receiving speech therapy and occupational therapy once per week (plus, also in school).

We are not looking forward to December though. On Dec. 4th she has to go back in for orthopedic surgery. This time they are doing the osteotomy on her left hip (the right was done in the summer of 2006) and putting screws in both ankles. A couple of days in the hospital and back in a wheelchair for a couple of months. We are praying that this will be it for a couple of years.

Daddy has once again changed jobs. Very much a promotion but a longer commute b/c of the Houston traffic. I told him, "Welcome to my world". He is now the receiver's coach for varsity football and the head baseball coach at Jersey Village HS in Houston. It is kind of weird b/c it's the same highschool that we attended many moons ago. Brings back lots of memories!
I am still working in the purchasing department at Harris Cty Dep't of Education. Like the job but hate the travel even though there are some perks!

Hope everyone is off to a good school year!
Please think of Sydnee on the 20th of September, her BMT Anniv. and say a prayer for her continued recovery!
Many Blessings to you all especially our MPS Family!
The Jensens

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E-mail Author: trishajensen@sbcglobal.net

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