Carson was diagnosed with PMD at 9 months of age after extensive testing. A failed hearing test at birth got the ball rolling and from there the first symptom to appear was nystagmus at around 4 months.
Read MoreThe Jones boys, Garrett, 16 and Gavin, 12, were diagnosed with Classic duplication PMD in 2001. Garrett was 3 and Gavin was not yet born. We (their parents, Gina and Gordon) made the decision to have Gavin partly because of the rarity of PMD. We felt that they would at least have each other as brothers and partners.
Read MoreAn inspirational speech by a young man, Cisco Oller, who battles Pelizaeus-Merzbacher Disease and is bringing down barriers with love, perseverance, and faith.
Read MoreYou make my life hard, really hard, and that is an understatement. But the one who you really make suffer the most is my innocent son, Nathan. He deserves a full life experience, but no, PMD, you robbed him of that. I really do hate you, and all of the pain you have caused me, my son and the rest of my family. The struggle has been real.
Read MorePMD is not a progressive, demyelinating disease. Human PMD studies can provide researchers with a longer timeframe to study specific patients. PMD research can potentially shorten the timeline towards a cure for all diseases of myelin, including Multiple Sclerosis.
Read MoreI held you in my arms a few minutes ago. I was contemplating the future and it is overwhelming. So I choose to exist here in this moment, and avoid visions of the impending scoliosis that your diagnosis, Pelizaeus-Merzbacher disease, dictates.
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