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Length of life for these children

Fatemah Message
6 Sep 2009, 05:42 PM

Hi everyone. I have been reading up on Hurlers since my preemie was diagnosed with it (she is now 6 weeks old, 34 weeks gestation corrected).... My question is that I keep reading that the children normally live no longer then 10 years.. I was wondering what you were told by their doctors regarding expectant lifespan... any information would be greatly appreciated thanks!
pfischer59 Message
7 Sep 2009, 11:14 AM

My granddaughter was diagnosed with Hurlers when she was just a little over a year old. Since then she has had a stem cell transplant and is making great strides everyday. Hurler's is a devastating disease that can only be treated with a bone marrow or cord blood transplant. This is very hard on the baby's body but without they do not typically live past 10 years old. Make sure you talk with your doctor about your child's options and what they plan for her course of treatment. My daughter was very proactive with my grand daughter's treatment and I feel that is why things got done so quickly. Remember you are your child's most important advocate, so ask lots of questions and demand answers. Hope this helps and if you need any information please feel free to ask.
Fatemah Message
7 Sep 2009, 05:37 PM

This helps alot thankyou.. is your daughter and granddaughter in the USA, or Canada or.... I would love to get in contact with another family that has this if possible... please let me know either way, thankyou :)
pfischer59 Message
7 Sep 2009, 05:58 PM

My family lives in Florida including my daughter and granddaughter. It is very difficult to cope with this disease and a good support system is vital. Please feel free to contact me anytime you wish. If you wish I could send you a link to my daughter's blog which has tracked my granddaughters from the time when she was diagnosed.
Fatemah Message
8 Sep 2009, 02:16 AM

The link to the blog would be wonderful, thankyou ! At least this way I can come to know what to expect more or less so there are not so many suprises.... it is hard right now in the NICU, one day to another, never mind wondering what the future holds for my daughter. The link to the blog would be appreciated, could you post it here or would you rather send it in email?
jennmarie Message
9 Sep 2009, 04:30 AM

My daughter, Allison is 8 years old with Hurlers. her website is: The MPS society is a wonderful resource: There is also an internet forum/message board for MPS families that is WONDERFUL! Best of luck to you!
pfischer59 Message
9 Sep 2009, 11:20 AM

Please take a look at my daughter's blog. It is a recording of all the family has been through during the fight with Hurler's. Best of luck to you!
jennmarie Message
9 Sep 2009, 12:21 PM

HI! I have been following and praying for Bella since her transplant! She is beautiful! you have a great family! Nice to meet you! Her Blog is in my Favorites file!
pfischer59 Message
10 Sep 2009, 11:17 AM

Bella is doing great! It has been a tough road since she was first diagnosed a year ago. We feel very lucky that she is doing so well. Thank you so much for keeping track of Bella's progress. It is nice to meet you also.
tlwalker72 Message
23 Jan 2010, 01:51 AM

My son is 3 and a half and was diagnosed a little over 1 year ago with Hurler Syndrome. He has since had a stem cell transplant (9 mo ago) and is now making the enzyme on his own, but his body is still fighting the transplant (hemalytic anemia) You can follow his story @ We pray everyday that he fully accepts the transplant until then we just take it one day at a time. Tyler vwasn't diagnosed until he was 2 and a half which is late, but at least he is now getting all the treatments to help him fight this. Please contact me if you want to share.
marcusdad Message
4 Feb 2010, 07:26 AM

Hello, I just discovered this site today. Just want to add our story. My son, Marcus, is 16 years old and is 15 years post BMT. He was diagnosed with Hurler's Syndrome back in 1994 when he was 16 months old. His website is We have been through a lot over the years, but he is doing well, loves high school, texting and talking on his cell phone, hanging out with friends, going to football games, basketball games and the dances. He is a happy go lucky teenager we refer to him as our miracle child. He has had the double knee stapling, pins in both ankles, double hip surgery, both eyes corneal transplant, and most recently, open heart surgery to replace the aortic valve.
Nathansmom Message
10 Oct 2013, 08:19 AM

My son is 17 years old and was just diagnosed with Hurler Syndrome 6 weeks ago. He is devastated as are we, his family. He has had multiple health problems since birth and despite all the doctor visits no one knew he had Hurlers. He was seen by a geneticist in Albuquerque in August and finally given a diagnosis.