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

Sunday, February 6, 2011 8:38 PM CST

I know it's been awhile - almost 4 years to be exact! Shame on me! :)
Sydnee is doing great! In 5th grade now and 11 years old. Next year she moves on to the BIG middle school - mommy is not looking forward to that!
She has started HippoTherapy again this past fall. She actually gets to participate in a rodeo event here for kids with special needs. It takes place in just 2 weeks. She is all excited about it! Even got some new black boots!
She is also participating in an MPS1 research program at the Univ of MN. She will travel there at the end of March again - this will be her 2nd year - it's a 5 year study. It is actually 2 studies - one on the brain development and the other on growth. It was nice last year because we got to spend some time with family up there as well. We are hoping to take Andrew with us this year.
Speaking of Andrew - he is in 4th grade now. Just finished up football and now it's on to baseball! He will celebrate his 10th bday on the 15th.
Well that's it for now.
Better late than never!

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E-mail Author: trishajensen@sbcglobal.net

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