CHARGE Syndrome

Supporting Max: Funding his DeafBlind Education



Max and Sloan could be best friends. I have watched the Youtube interview probably five times now, and cannot get over the similarities they share. The laughter, the ways they pick up on when people are comfortable around them and when people aren’t, and the happy shoulder dancing. Max’s family is just awesome: treating Max with respect, love, and – it seems to me – king vibes. Just like we treat Sloan with queen vibes. I couldn’t get over it.

By way of background, I have been following Special Books by Special Kids since Sloan’s 20-week ultrasound: learning about different disabilities, accessibility, and inclusion. Chris’ work here is awesome: interviewing disabled individuals – both adults and children – and bringing awareness to various types of disabilities and life experiences. Today I hopped on IG like I usually do and saw that he had interviewed a family with a DeafBlind teenager: Max. When I saw the post I immediately thought – oh. my. gosh. This sounds like Sloan!

Max and his family are located in an area where DeafBlind education and resources aren’t readily available like they have been to Sloan since she was born: we’ve been extremely lucky that way. This has been reiterated from messages and questions I’ve received on our account, and I have realized how fortunate we are: but how unfair this is for the broader DeafBlind population. If you’re not already aware: it’s rare to have access to a DeafBlind education program, DeafBlind educators, various therapists who understand DeafBlindness, and the support Sloan and I receive from an academic perspective.

Max and his family have worked extremely hard to raise Max while fighting systemic barriers along the way. They are continually on a mission to get access to the same resources kids like Sloan receive in their education every day. Chris through Special Books by Special Kids has started a fundraiser to help fund his education and connect him to resources like Sloan has been connected with since birth. In watching Max and his family, I was in awe: because they make it look easy – but I know from my own personal experience that it takes so much work and care to learn what they’ve learned and help get him to the place he is today.

Work, care, love, and dedication to things that many parents of non-disabled kids may never experience or understand. It’s a very unique and rare experience to raise a DeafBlind child in an inaccessible, sometimes unsupportive world.

If you are able to share with your networks or have a few dollars to spare, please share and donate. This education fund will be going to a boy who could greatly use it and has so much ahead of him: having already learned so much with very little resources and the most amazing, loving family backing him along the way.

One more time: here are the links to Max’s GoFundMe and the Youtube Video if you would like to learn more:

Fund Max’s DeafBlind Education: GoFundMe (A Fair Chance for Max)

Youtube Video: DeafBlind and Intellectually Disabled