The Hubert Family
We are the Hubert family from roscoe, Illinois. My husband Jake and i are originally from the Champaign area. We moved to northern Illinois in 2007 for Jake's new job as a high school assistant principal. I am a stay at home mom with 2 beautiful girls: Livia Grace is 4, and Finley Faith is 2 years old. Before i was blessed with my current situation, I was a surgical technologist.
Livia was diagnosed with MPS-III A, Sanfilippo syndrome, on July 8, 2009. Finley was just 8 weeks old. Our lives were turned upside down and we still have our moments of “how can this be our life?” Livia hit all of her developmental milestones as a baby until it came to walking but she did not walk until she was 18 months old. Livia has “episodes” that we thought were seizures. After neurologic exams no seizure activity was noted, and the dr. said it was a habit she had formed.
When her speech wasn’t developing like we thought it should, we sought out early intervention for speech therapy. Her therapist suggested to us that Livia had some characteristics for which we might want to see a geneticist. I shrugged it off. We had her hearing tested and it was indicated that she may have a slight hearing loss, so we were referred to an ENT. This doctor thought she had fluid build-up and that tubes would help with her hearing, and in turn speech delay. We thought this was going to solve all of our problems. After Livia's surgery, the ENT doctor informed us that, during her surgery, he came across some things that were questionable and we might want to follow up with a geneticist.
This was the second time we heard geneticist, but it still didn’t register with me that something was wrong with her that we would need to see a geneticist. During one of her routine well-baby checks, our nurse practitioner mentioned seeing a geneticist to us. Third time was a charm for me and I scheduled the appointment. I’m pretty sure all of you reading this know where the story goes from here. Positive urine test, blood test confirmed the diagnosis. Finley was tested immediately and her results were that she was just like her mommy and daddy: A carrier.
This diagnosis has changed our lives in so many ways. We’ve always had a strong faith, but it has been renewed ten-fold! We’ve also decided that this diagnosis does not define our family. This is in our life, but it does not rule our life so that we can’t function. We have our bad days and will have bad days every once in awhile. We now know how important it is to have more good days than bad. We are such an active and happy family. It’s not often you find us sitting still. Livia’s diagnosis has opened our eyes in a way most people don’t get to experience.
When we were first learning about Livia's condition, I kept focusing on the future. I kept thinking about all of these horrible things that might happen to her. No one knows what their future holds. I’m able to Liv each and every day to its fullest. We get to experience our lives and the lives of our children in a way that was different before July 8, 2009. To me, this is a blessing. Of course i don’t want this in my life, or Livia's life, but it is and I'm determined to give her the best possible life I can, because she deserves it.
Livia is such a vibrant and happy child. Her speech still isn’t where it should be, but she is gaining more words each day. She also does some sign language that she enjoys helping me teach Finley. Some of Livia's favorite things include: reading, dress-up, the wiggles, sesame street, baby dolls, horses, you tube (specifically Beyonce’s single ladies video), coloring and getting into anything she can get her hands on!
Our walls and doors are decorated with original artwork by Liv! She loves music, and Santa brought her a piano for Christmas this year. Livia loves her baby sister, Finley, who is such a trooper enduring all of those hugs and kisses.
Jake and i have been married for 5 years. Our girls are our life. When we get free time with one another we enjoy movies and playing games. We have a very supportive and loving family and group of friends.
From the Hubert household to yours, we are here to listen, cry, and laugh with you. This life is a journey and no one has to travel it alone!
Jake, Kelly, Livia and Finley Hubert