Meet REMI! Remi is my goddaughter and one of the most amazing kids in the whole world. A couple of years ago, I “met” Remi’s mom, Sam, through work. She was interested in some of the sports monitors I sell. Little did I know that a simple conversation would turn into a great friendship and becoming extended family. It didn’t take too many conversations for Sam to start telling me about Remi.
Remi was diagnosed with Glut1-DS, a neuro-metabolic brain disease, when she was eight and a half years old. She had her first seizure at 3 days old, which started the long road to a diagnosis. She didn’t roll over as an infant and didn’t learn how to sit until she was four and half years old. She finally learned how to walk at age 5, despite uncontrolled movements, tics and falls. At the time that Remi was diagnosed, less than 100 people in the world had been diagnosed with Glut1-DS. Remi is on a very strict ketogenic diet that seems to be the only form of treatment at this time. It wasn’t until after starting this diet that she finally learned to talk.
My heart was touched when Sam told me all of this. It was amazing to hear about all of the obstacles that she had already overcome. One thing that caught my ear was when Sam told me that Remi says all of the time “When they give me a cure, I am going to have a party with birthday cake and invite friends. I want to be like a normal kid and eat normal food.” It broke my heart to think that all this kid wants is a friend and to be like all of the other normal children.
My mind starting going a mile a minute about how I could help make this child’s life a little better. How can I make her smile or make her feel like someone else out there cared about her. I decided to become pen-pals with Remi. I’m not sure who was more excited to get a letter in the mail, me or Remi. After several months of writing letters and talking on the phone, I finally got to meet her in February last year. I will never forget the first day I met Remi. Her and her mom came to pick us up from the airport and Remi was waiting in the backseat. I immediately jumped in and she looked at me with excited eyes and handed me one of her foundation bracelets. How sweet of her to think to bring me a gift! After spending just a weekend with her and her family, I couldn’t figure out how you couldn’t love this girl. She was the funniest, most loving child I had ever met.
Little did I know that she would end up changing my life instead of me changing hers. Remi has accomplished so much in her short life, despite all odds. She has learned how to walk on her own and talk. This year she made the field hockey team at her school!
She has learned to swim and a few weeks ago won 2 medals at the Special Olympics! Not 1 BUT 2 MEDALS!! Talk about determination!
I am proud to be given the honor of being her godmother. I love Remi more than words could ever say. This Sunday I will be running my first ever Half Marathon. Something I never thought I would be able to accomplish. I will be running on Team RSG1 for Remi’s Foundation. Every time I get tired or frustrated with my training, I look at the bracelet on my wrist and remind myself how much Remi has overcome – always with a smile on her face. Even on my worst days, Remi will say “I lova you Godmother” and make all of my frustrations and sadness go away.
My wish it that everyone would get to meet Remi one day and see how she can change your life. I believe that God puts people in your life for a reason, and I am so thankful that Remi was put in mine. If you would like to read more about Remi’s story, here is a link to her foundation’s website -
http://www.remisglut1foundation.com/aboutthefoundation/remisstory.html
http://www.remisglut1foundation.com/aboutthefoundation/remisstory.html
