Maura was diagnosed with MPS I, Hurler Syndrome on August 24, 2012 at 11 months of age. On November 8, 2012, she had her life changing Cord Blood Transplant at UCSF.
Maura’s parents, Eric and Amber along with her brother Liam went to California with her to begin enzyme replacement therapy (ERT), and to watch her go through a transplant. There was constant traveling back and forth for the family as they cared for Maura. Even today the traveling entails visiting many physicians and specialists that care for Maura.
Maura’s family explains…
Upon her diagnosis, we didn’t know where to turn. When we searched the term MPS on the internet, we found the National MPS Society and have become forever indebted to them. They put us in contact with many great people, helped us to obtain financial assistance and kept us informed along the way.
In return, we have volunteered to speak with other families, we’ve put on fundraisers for MPS Awareness Day- May 15th multiple times, and fundraisers to celebrate Maura’s transplant date. I (Amber) am on the Board of Directors for the National MPS Society, serving as the Secretary and on 3 committees to help in every possible way.
STILL, we want to help the Society raise more money to forge on with their efforts in finding a cure!
To celebrate Maura’s LIFE, we are asking you to help too. All monies donated to the National MPS Society help to find new treatments to better Maura’s quality of life as well as help them to find a cure for MPS. You can help in many ways (feel free to ask anytime)! Does your job offer jean days? Some companies will let you pay to wear jeans and the money collected can be donated to a 501(c)3. There are ALWAYS ways to help and to be involved and we truly appreciate you caring.
Thank you so much for all of your support for this past two years! We look forward to your continued support as Maura battles this disease for the rest of her life.
To read more about our journey please visit her Caringbridge Site!
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