Fighting & Remembering

Posted by Melissa

This list is being compiled through a private Yahoo! group for parents who have or have lost children with Gaucher Disease.

Currently Fighting Type 2 or 3 Gaucher Disease: 11 Children

* Addison B. from Virginia. Type 2, age 7 months (diagnosed at 7 months).
* Alexa I. from Kansas. Type 3, age 3 (diagnosed at 18 months).
* Ethan M. from Kansas City, Missouri. Type 2, age 23 months (diagnosed at 11 months).
* Hannah O. from The Woodlands, Texas. Unknown type, age 9 months (diagnosed at 5 months).
* Jordell W. from Mason City, Iowa. 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 Tennessee. Type 3, age 17 years (diagnosed at 6 months).
* Tylan C. from Nevada. Type 3, age 4 years (diagnosed at 18 months).
* Connor M. from Leachville, AR. Type 3, age 11 (diagnosed at 15 months).
* Savannah H. from NC. Type 2 or 3, age 5 years (diagnosed at 1 year).

Children We Have Lost To This Disease: 8 Children

* Avery M. Type 2. Diagnosed at 4 months, passed away at 15 months.
* Joseph D. from Illinois. Type 2. Diagnosed at 12 months, passed away at 3 years 26 days.
* Kyle from New York. Type 2. Diagnosed at 7 months, passed away at 25 months.
* Aaliyah L. from Kentwood, MI. Type 2. Passed away just shy of 3 years (2008)
* David E. from Mexico. Type 2. Passed away at 7 months (2007).
* Josephine R. Lampitt from VA. Type 2. Diagnosed at 7 months, passed away at 9 months. (Feb `09)
* Ryan R. from TN. Type 2. Diagnosed at 11 months, passed away at 2 years.
* Emma P. from Auburn Washington. Type 3. Diagnosed 15 months, passed away at 6 years. (2002)

Permalink | Comments (3) | May 10, 2009

3 Responses to “Fighting & Remembering”

  1. Joseph M Says:
    September 22nd, 2009 at 9:58 am

    I am part of the yahoo group, but don’t say much.
    We lost our Joseph on May 18, 2009th to Type II, he was 4 days shy of 7 months old. It so still hard today to wonder why this happend and why we weren’t given much time. He would’ve been 11 months old today.
    Could you add him to your website, Fighting & Remembering?

    Joseph M – Harrisburg,SD-Type II-May 2009-7 Months

    Thank you,
    Candice Mueller

  2. Scott Stromer Says:
    November 6th, 2009 at 7:56 pm

    Makenna began showing signs of Type 2 around 5 months old (extended abdomen, trouble swallowing, and strabismus. After countless tests, a feeding tube, and many visits to Seattle Children’s Hospital, Dr. Graf finally diagnosed her through a bone marrow test. This was two days before she died (October 1993. I will always be grateful to Dr. Graf and Genzyme Corporation for the diagnosis and for the donated enzyme replacement therapy that Genzyme flew up to Seattle. In 1993, enzyme replacement therapy didn’t necessarily work for Type 2 patients but doctors were willing to give it a shot. Great strides in fighting this disease have been made since then (ERT and stem cell therapy). Time has a way of healing the frustration, anger, and tears. Losing Makenna is something I have been getting through but never over. Writing in a journal to Makenna over the years has helped me through the pain. Her strength and outlook while she was here was truly amazing and inspiring. I learned so much more from her than she could ever learn from me. For those of you have had such a loss, I am so sorry. We are part of a club that no one should ever have to be in.

    Makenna Maree – Bellingham, WA Type 2-October 1993 – 13 months

    Thank You,

    Scott Stromer

  3. Kia H. from Maryland Says:
    April 24th, 2010 at 10:31 pm

    My daughter is 15 months and was diagnosed with Type II Gaucher Disease on Friday April 24 2010.

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