Ian’s Story and Mission for a Cure

Little Ian was just recently diagnosed this year with Type 1/infantile GM1.  Ian is a little fighter and his family has joined the fight for a cure!

To donate in honor of Ian, go to CrowdRise to see his campaign.


Just before Ian turned 1, he was diagnosed with development delay.  His family was referred to a neurologist in October of 2015 and their journey began. Ian was reaching milestones just fine until about 10-12 months old. He started regressing, losing abilities and skills he had acquired.

He was diagnosed with hypotonia (low muscle tone) and an ophthalmologist also found a cherry red dot in his macula during an eye exam.  In January 2016, an MRI revealed that he has low white matter in the brain which was labeled as delayed myelination. The myelin sheath, is little to none, like that of a newborn.

Ian gets startled very easily, he cannot hold his head up on his own.  He does not sit up unassisted.  He can not reach and grasp for toys, and he has poor eye contact. In the past, his head control was not so bad, he even started to learn to crawl, but the crawling was quickly lost.

Ian was diagnosed with GM-1 Gangliosidosis after more than a year of searching for answers. Despite this devastating condition,  he goes on.  He goes on everyday with a smile so bright, a soul so strong. He is a fighter. He is a hero.  He is an angel of hope and a little ray of sunshine!

Thank you to the Ortega family for joining our mission to fund medical research and a cure for GM1!

3 Comments on “Ian’s Story and Mission for a Cure

  1. Ian you are a true fighter. May gid continue to blesz you and your family..


  2. Im doing my best to make sure people know about you and what we ar fighting for….Ian I havent had the pleasure meeting you but you are in m prayers titi lives yoy very much much…you are will and I know you are a fighter continue to fight..God bless you and mami and daddy


  3. Dear Shanel,
    Thank you for sharing Ian’s and your family’s story on Fox 35. I will be praying that God will guide you to the perfect doctor who will give you and your family the breakthrough you are looking to find to heal baby Ian.


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