When we went through everything after Bex’s birth for the brain abnormality, my mom, Sharon Rios (shout out!) originally stated, “No matter what is in the future for Bex, it will always be Team Bex.” Over the last 8 and a half going on 9 months, she often reminded me that even if Bex were to face challenges, she was blessed to be surrounded by parents, grandparents, aunts, uncles, and great-grandparents, who would all be on her side cheering her on no matter what. When Bex was diagnosed with IS, she thought of the idea to create t-shirts for people to show their support for Team Bex. She also surprised us by having bracelets made as well! Regarding the shirts, Bex’s Aunt Calli (another shout out!) found a friend that could have them made cheaply and came up with the idea to sell them and donate the profit to research for IS.
As Lindsey mentioned in her previous blog, one of the hardest things about having a child diagnosed with a rare condition is that there is not a huge parent support network to rely on for support and reassurance. In addition to that, there is also a lack of awareness about your child’s condition, which in turn means, that not a lot of money goes toward research. We have had T-shirts and bracelets made to serve two purposes 1) spread awareness about IS and 2) raise a little money to help go toward IS research. We were fortunate to have Bex diagnosed quickly, so she could begin treatment within a week of the spasms starting. We have read so many stories of parents that have had to fight to get their child into a neurologist or the child’s spasms go on for months without anyone correctly identifying what is going on. The longer the spasms go on for the more detrimental it is to their development. Our hope is that if people see you wearing a bracelet or t-shirt in honor of Team Bex, they might ask you more about it and you can share a little bit about Bex’s story as well as what Infantile Spasms are. This will help create awareness amongst parents, grandparents, siblings, friends, aunts, uncles, etc. And who knows, maybe it will help one baby get diagnosed a little bit sooner. This will also allow us to make a donation in Bex’s name to go toward IS research to make sure that research and awareness continues.
So would you like to officially join Team Bex? Email either myself (firstname.lastname@example.org) or Lindsey (Lindsey.email@example.com) to let us know you would like a shirt and bracelet as well as your size (Small, Medium, Large, or XL). Then we will send you our address, so you can mail us your payment. We are asking $12 for the shirt and bracelet. We plan on donating $10 to IS research and the other $2 will help us cover the cost of shipping expenses to get the items to you.
Below you will find a picture of the shirts as well as the bracelets. The shirts will be dark gray. Purple is the color associated with awareness of epileptic conditions, so that is why we chose that color for the font and the bracelets. There is no pressure to purchase/donate for this cause, but if you do we truly appreciate it.