It is likely that most of you do not know, but today is the World (or International) Day of Awareness for Disorders of the Corpus Callosum.
I mentioned ACC when I wrote about Tim in my last post, but in case you missed it, here is what the corpus callosum is:
The corpus callosum is the bridge between hemispheres of the brain. Tim is missing his, like many other children and adults around the world. Because ACC does not typically have visual manifestations, those with ACC often go undiagnosed. In other cases, people with ACC are not taken seriously when they seek help for their disability. And let’s be clear, it is a DIS-ability, not a NON-ability. Those who have ACC, can lead normal, happy, productive lives, if they are given the extra help that they need, in the areas they need it.
On July 2nd, the National Organization for Disorders of the Corpus Callosum (here in the U.S.) and its partner organizations globally, try to spread awareness of this condition. First, so that perhaps funding can be raised to help do research on effective therapies to reduce the impact of the disorder, and second, to give parents of children with ACC enough information that they can best find a team of support to help them give their child a normal, happy, productive life.
Several weeks ago, Heather was looking for a vendor who makes custom tees so that our family could have a matching set of shirts for today.
As you can see, she found a company that makes custom tees. When she contacted the company, one of the owner, Tiffany Tannhauser told Heather that she and her company would like to donate the shirts to us, in order to help raise awareness for DoCC.
has been a huge blessing to our family. While I don’t want to use my blog as a sales tool for every company I find to have good service, this is different. Tiffany, Sara, and Tim (the three owners), run the kind of business that I would be remiss to not mention. Yes, they did us a great act of kindness (as you may know, tees of the quality we received [and Holly’s matching onesie] aren’t cheap), but this isn’t quid pro quo. Rather,I believe that A company with the heart to help others is the kind of local business that we all should be supporting.
One of the lessons you learn as the parent of a child with ACC is that, for the most part, ACC is an invisible disorder. That is to say that since most children look and ‘seem’ ‘normal’, the assumption by outsiders is that the parents aren’t struggling terribly to provide for the extra needs of their child. We ACC parents don’t often get support outside of our little support groups, and at times it can be frustrating that no one has even the smallest clue as to how difficult it is to raise a child with ACC. But we don’t complain, because we know that ACC is so much less challenging than other disorders and conditions, and so we ACC parents don’t want to complain. Thus it is, that for the most part, we raise our children as best we can, with little acknowledgement of our struggle, and ever little acknowledgement that we can use whatever help we can get.
So, when TST Souvenirs & Balloons offered to create these tees and this logo,
free of charge, with no strings attached, we were blown away. We didn’t know the owners of the company, and yet, like the Good Samaritan, they saw a need, and went beyond the call of duty to meet it. This precious gift, which allows us to help raise awareness of ACC for Tim and others like him, is a reminder that despite what we feel is the invisibility of Tim’s condition, there are still many kind, generous people in the world who are willing to help, if only given the chance.
If doing business with a company like this sounds appealing to you, please check out TST at tstsouvenirs.com, send them an email at email@example.com, or check them out on Facebook @tstsouvenirs.
I am so grateful that Tiffany, Sara, and Tim run their business with such kindness and generosity, and look forward to building a friendship with these three remarkable folks as the years roll by. I hope you will check them out and do the same.
Happy World Awareness Day for Disorders of the Corpus Callosum!