Today we celebrated Finn’s First Rare Disease Day! It’s a day to shine light (no pun intended) on all of those effected daily by their disorders!
For families like ours, having a rare disease comes with a lot of struggles. Finn’s Shine Syndrome has impacted his development in all areas of growth while simultaneously caused regressions and epilepsy. Finn’s epilepsy has been his hardest medical issue for the past year. His hasn’t been seizure free for longer than 2 weeks since this past fall. Medication side effects and finding the right medication has been a challenge. Finn has missed weeks of school as a result.
I wish I could be the parent that says even through all his adversities Finn was still a happy kid. That just isn’t that case for him a lot of the time. Finn went months without smiling which broke our hearts 🥺 We are hoping this changes for the better soon!
When I became a mom, this wasn’t the path I thought I would be on. Advocating at doctors appointments, being Finn’s voice, questioning so many decisions, or becoming an expert on topics I never thought I would. I’ll keep fighting for Finn until all options are exhausted!
Finn deserves to have a happy childhood and when Finn is having a good day, it’s a great day in our house!
The DLG4 Shine Foundation is doing a lot of amazing work to help kids like Finn! All proceeds go toward research in the hopes of finding a cure one day or even a medication to lessen symptom severities! I put a link in my bio for anyone that wants to donate 💛
To the sweetest boy who made me a mama. I remember when I found out I was pregnant, knowing it was a boy right away. I just knew. When they called with the gender results and she said it’s a boy, I told the nurse, I know! I have felt that way from the beginning. My intuition with you has always been strong. When you were showing signs of developmental delays early on, we watched as you made so much progress in therapies and thought you would only keep improving. As you turned 3 I knew something more was going on. I didn’t realize looking for answers would take so long. At 4, you lost the ability to speak. You stopped sleeping for an entire year. Daddy and I always said when you were little how happy you were. This wasn’t the case anymore. We felt so bad bc we knew you felt terrible a lot of the time. We did a few genetic tests, EEG, MRI and everything was coming back normal. I would tell your pediatrician I think he’s having headaches but he can’t tell me, I didn’t know what to do. I showed pictures of your face which didn’t look fully symmetrical to your Neurologist to be told “that’s his Autism” although that wasn’t your diagnosis. He just assumed you would get that based on your symptoms. Something in me knew that wasn’t your whole story. Then came February 2023 you had your first seizure. You were diagnosed with frontal focal epilepsy. We believe that went undiagnosed for a couple yrs explaining the headaches, language loss, and much more. Luckily the medication kept your seizures under control. However just this past March you had your first grand mal and drop seizures which resulted in two separate trips to the ER for stitches 😫At the same time we got your Whole Exome Sequencing results back which finally gave us our answer. Shine Syndrome. You are 1 in about 150 people in the world right now with that diagnosis. 🤯 This diagnosis came with a lot of sadness, but also a feeling of relief that we have an answer. We don’t know what the future holds for you, but I hope you know we will never stop doing everything in our power to help you live a happy, fulfilled life! You have taught me more in 7 yrs then some learn in a lifetime! I love you Bubby!! ❤️😘
✌🏼 days late bc we have been having such a fun weekend in Chicago! Happy 7th Birthday bubba! We love you so much and I’m so lucky to be your mama! 😍😘 @ba66io
A few months shy of 4 yrs, but today felt like the best day for this chick to finally be done nursing 😊 Not sure how I made it this long 🤪 but feeling grateful for this amazing bond we’ve shared. Love you Sissy Girl! Happy Mothers Day to all the Mama’s ❤️
For over 9 years we have been so fortunate to call California our home. We’ve experienced so many memorable moments, made amazing lasting friendships and brought two amazing kids into our lives. We bought, remodeled and now sold our first home! We will miss this beautiful place, but excited for this next chapter back in the Midwest! Getting the Galaxy crew back together in St. Louis! @ba66io@heydangargan@klgargan@tmeyer__ 😍
