One of the first thing that many newly diagnosed parents attempt to find are pictures and stories of children who have diagnoses similar to their own. Finding blogs and pictures are easy, but finding them with similar lesion levels can be difficult and time-consuming.
Having said that, it is important to understand that just because two children have the same defect level, does NOT mean they will have the same function level. This has come to be known as the “snowflake effect,” meaning no two children have the exact same functionality.
Nonetheless, the ability to find happy, healthy, functional children with similar diagnoses can provide immeasurable comfort and hope to newly diagnosed parents.
To upload your blog link, please fill out the form on the right side of this page.
Bella, 05/12/2009, Diastematomyelia, Thoracic, VPShunt
Annabelle, 08/07/2008, myelo, T5, VPShunt
Simeon, 05/23/2012, myelo, L1, VPShunt
Greyson, 02/12/2009, myelo, L2, VPShunt
Nate, Fetal Surgery, 06/25/2006, myelo, L2, ETV/CPC
Ireland, 03/2003, myelo, L2-3, VPShunt
Mira, 01/21/2007, myelo, L2-3, VPShunt
Jacy, Fetal Surgery, 03/23/2005, myelo, L3-5, Subdural Shunt
Tanner, 12/15/2008, myelo, L3-S3, VPShunt
Annabelle, 07/29/2009, myelo, L4, VPShunt
Darren, 06/04/2014, myelo, L4, NO Shunt
Grayden, Fetal Surgery, 09/19/2010, myelo, L4, VPShunt
Madison, 06/25/2009, myelo, L4, VPShunt
Liv, 02/07/2012, myelo, L4-ish, VPShunt
Madison Hope, 01/10/2009, myelo, L4-5, VPShunt
Lauren, 09/20/2003, myelo, L4-5, VPShunt
Brenden, 03/02/2008, myelo, L4-S1, VPShunt
Zelie, 12/01/2013, myelo, L4-S2, ETV/CPC
Carl James, 05/31/2007, myelo, L4-S5, VPShunt
Lucy, 12/22/2009, Lipomyelomeningocele, L5, No Shunt
Ruth, Fetal Surgery, 07/22/2010, myelo, L5, ETV/CPC
Silas, 10/2009, myelo, L5, ETV/CPC & VPShunt
Wyatt, 01/02/2009, myelo, L5, VPShunt
Hayden, 02/24/2009, myelo, L5-S1, VPShunt
Korie, 02/06/2014, myelo, L5-S1, ETV/CPC
Kemper, 11/22/2010, myelo, S1, VPShunt
Nickolas, 12/13/2009, myelo, S1, VPShunt
Kingsley, 01/15/2010, myelo, S1-2, VPShunt
Beckett, 06/30/2010, myelo, S2, VPShunt