Comments on: Fighting & Remembering http://acherishedangel.com Thu, 22 Jul 2010 18:01:12 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: Kia H. from Maryland http://acherishedangel.com/fighting-remembering/comment-page-1#comment-821 Kia H. from Maryland Sun, 25 Apr 2010 02:31:13 +0000 http://acherishedangel.com/?page_id=80#comment-821 My daughter is 15 months and was diagnosed with Type II Gaucher Disease on Friday April 24 2010. My daughter is 15 months and was diagnosed with Type II Gaucher Disease on Friday April 24 2010.

]]> By: Scott Stromer http://acherishedangel.com/fighting-remembering/comment-page-1#comment-402 Scott Stromer Fri, 06 Nov 2009 23:56:56 +0000 http://acherishedangel.com/?page_id=80#comment-402 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 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

]]> By: Joseph M http://acherishedangel.com/fighting-remembering/comment-page-1#comment-360 Joseph M Tue, 22 Sep 2009 13:58:23 +0000 http://acherishedangel.com/?page_id=80#comment-360 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 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

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