"I think it's time to consider a feeding tube."
"We need to set up another neurology consultation because what you're describing to us indicates seizure activity and a possible movement disorder."
"It must be so hard for you, as a family, to know that there is a treatment on the horizon, but it won't be here in time to help Livia. I'm so sorry."
Sanfilippo Syndrome has been a cement block wrapped around my ankle, dragging me deeper. Since we heard those words, just 2 months ago, I feel like I've been drowning. It's a tough pill to swallow knowing that A- this disorder is progressing quicker than we want. B- we have to make decisions for our child that are painfully hard. C- when reality is spoken aloud, there's no denying. Livia is falling deeper into this scary world. A shortened life of very unfair circumstances that children are not suppose to go through. Parents and siblings and families, either, for that matter. So our job, as her parents, are to provide the best care and opportunities to give her safety and love. Love.....that's the easy part. Our hearts bleed love for her.
I attended a women's conference this past weekend. One of the speaker's, Helen Burns , was one that I could have listened to for hours and hours. She spoke with so much love for God and her family. She's someone I aspire to be like. She said something (many things), but one thing in particular that hit so hard I haven't been able to stop thinking about it. She said "As you are raising your children, you are raising your grandchildren." HELLO.......so true. I, of course, thought immediately about Finley. To be honest, she was on the forefront of my mind the entire conference. Thoughts of attending this conference with her one day, experiencing missions with her, her future family, etc. However, this idea of raising our grandchildren while we are raising our children made me think of Livia, as well. Jake and I are at peace about Livia's future. I can say that now because she's here today. But, the idea of her cure, her freedom from Sanfilippo Syndrome will come in Heaven. Her salvation is secured, and we can rejoice in that. However, hearing those words 2 months ago extinguished that fire inside me to fight. The fight we formed when Liv Life was created. Jake and I wanted to do something when it came to MPS. We wanted to make a difference in someway when there was nothing we could do for Livia. We established our 501 c3 status, have a BOD, have meetings, sell tshirts, and have events. We've been able to write checks to Nationwide Children's Hospital, Lurie Children's Hospital, all for medical research. But for me, selfishly, I wanted to stop. Selfishly, I thought, well, I guess we lost our fight....what's left. Then it hit me. Once again, alone in my van, I heard God's voice. He said, "What if I decide I want you and Jake to have another child, What if this happens to Finley, What if a baby is born today that has Sanfilippo?" I can not just focus on my child, but I know that as a child of God myself, I have a duty for all His children to do what I can.
There's a little girl named Eliza. A beautiful girl with a beautiful family that is fighting with every inch of their being to save their daughter, as well as future generations. Eliza has Sanfilippo Syndrome, and this treatment that is so very very close may be in time to save her life. I want to apologize to the O'Neill family for my selfishness. I've watched on facebook their daily, persistent, cause worthy work they are doing for our children. I've avoided watching their viral video because I was tired and sad for Livia. I watched it just this morning after my van moment, after praying. I was just about to turn my van off and my most favorite, go to song that I think is the best song out there "Ocean's" by Hillsong came on. I've listened to this song over and over again. I worship like I've never worshiped before when I hear this song. Today, I saw myself in this song. I saw myself drowning, with that cement block bound to my ankle. I then saw it break off and my head coming out of the water, taking a deep breath. I heard God tell me that I'm in his embrace and that He will not fail me. He loves me, He loves Livia. So today, I knew that my fire was back. I get to do life with my beautiful family, I pray, for many days ahead. But, I will fight along side the O'Neill's and many other children out there because if this is God's will, then I'm called to help. I'm asking all of you, please, take a moment to watch this beautiful family. Not only will you see Eliza, but you'll also see the gorgeous Izzy Jurado. These two girls together show exactly how devastating Sanfilippo Syndrome really is. Click here to watch their story, their fight, and maybe you will be called to help. Also, please share my blog, their video, all of it, because the more people we reach, the more opportunity we are giving our children (Galatians 3:26 "So in Christ Jesus you are all children of God through faith").