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Welcome to Daniels webpage. We call him "Squeek". Squeek was born October 17, 2004. Squeek was diagnosed with Hurlers Syndrome on January 24, 2005. In March of 2005, Squeek began enzyme replacement therapy, recieving 12 treatments prior to having a bone marrow transplant on June 10, 2005, at Fairview Childrens Hospital, at the University of Minnesota. He then received an additonal 8 treatments following the transplant. Currently, Squeek is 100% engrafted with his sisters cells. However, his enzyme level is only 43% of normal. Currently there is not a cure for Hurlers Syndrome, and we pray each and every day for that cure to be discovered. Squeek continues to face many challenges, yet has been a true hero through it all.
We have been truly blessed by all the support that we have received by so many. A big "Thank-you" to all of our family, friends and co-workers, for being by our sides. We know that it is the many-many prayers that have been lifted for Squeek, that have gotten him through so much.
Thanks for visiting Squeeks website, and please continue to keep him in your prayers.
Journal
Monday, July 19, 2010 7:47 PM CDT Hi everyone,
Everything is going well. We made it home last Tuesday. We were very excited to get back. It seemed like we were gone much longer than we were.
Squeek had his first therapy appointment today. It was more of a consultation. The therapist removed the splints and looked over Squeeks fingers. Squeek doesn't like to look at his fingers just yet as there are several stitches and he is not quite sure what to think of it. So he will start the actual excercising part of the therapy next week. We are going to start with twice a week at first and see how that goes.
We did get a letter from the endocrinologist today that is recommending that we see a local pediatric endocrinlologist as Squeeks IGF-1 is low, indicating growth hormone deficiency. This is not unusual for children with MPS. The question is rather a growth hormone would be beneficial. We had suspected that the blood work would come back like it did, as Squeek has dropped from the 90% tile for height to 50% tile since last fall. Our bone marrow doctor and Squeeks spine surgeon discourage the use of this hormone, as the feel the risks outweigh the benefits. However we will follow-up locally to see if there are any other options available.
Saturday was a benefit golf outing for Squeek. It was great. Everyone looked like they were having a great time. The weather was great. The food was great. And the company was awesome. It was an amazing day for our family, and we thank everyone involved!!!!
Rachael is doing really well too. Saturday before the golf outing she decided to fall off her horse. Well, maybe the horse decided to have Rachael fall off. She is a little sore yet, but no broken bones. :-)
Squeek starts summer school in a couple of weeks. After his kindergarten testing they recommended that he do a program that is offered to better prepare him for school. I'm sure he will enjoy it, as he loves to be around other kids.
I guess that's it for now. Thanks to everyone for checking on us.
Traci
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Hospital Information: Fairview Childrens Hospital
516 Delaware Street SE
Minneapolis MN 55455
763-782-9460
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