As of May 9, 2009, I have found 11 children (including Hannah) that are living with Gaucher’s Disease type 2 or type 3 and a handful of families who have lost a child to this disease.
If you are a family with a child with GD2 or GD3 or a family who has lost a child to GD2 or GD3, please, please contact me. We have a private Yahoo Groups email discussion list where you can talk to other parents of GD2 and GD3 children that you are welcome to join. You are not alone in this fight anymore!
If you have a blog or website for your GD23 child, please email me so I can share it on this site. If you need help starting a blog, just let me know, and I’ll help get you set up!
Children still fighting for their lives:
~ Addison B. from VA. Type 2, age 7 months (diagnosed at 7 months).
~ Alexa I. from KS. Type 3, age 3 (diagnosed at 18 months).
~ Connor M. from Leachville, AR. Type 3, age 11 (diagnosed at 15 months).
~ Ethan M. from Kansas City, MO. Type 2, age 23 months (diagnosed at 11 months).
~ Hannah Ostrea from The Woodlands, TX. Type 2 or 3, age 9 months (diagnosed at 5 months).
~ Jordell W. from Mason City, IA. Type 3, age 3 years (diagnosed at 18 months).
~ Kyle I. from Ontario, Canada. Type 3, age 10 months old (diagnosed at 8.5 months).
~ Mario M. from Jamaica West Indies. Type 3, age 13 years 8 months (diagnosed at 5 years).
~ Raechel R. from TN. Type 2, age 17 years (diagnosed at 6 months).
~ Savannah H. from NC. Type 2 or 3, age 5 years (diagnosed at 1 year).
~ Tylan C. from NV. Type 3, age 4 years (diagnosed at 18 months). Children we have lost to this disease:
~ Aaliyah L. from Kentwood, MI. Type 2. Passed away just shy of 3 years (2008)
~ Avery P. Type 2. Diagnosed at 4 months, passed away at 20 months. (2004)
~ David E. from Mexico. Type 2. Passed away at 7 months (2007).
~ Joseph D. from IL. Type 2. Diagnosed at 12 months, passed away at 3 years 26 days. (1996)
~ Josephine L. from VA. Type 2. Diagnosed at 7 months, passed away at 9 months. (Feb ‘09)
~ Kyle from NY. Type 2. Diagnosed at 7 months, passed away at 25 months. (1996)
~ Ryan R. from TN. Type 2. Diagnosed at 11 months, passed away at 2 years.
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