Just wanted to post a quick update. We have no news on Jayden’s test results. We are hoping to get some news today. We are prepared to hear he has Sanflippo and which type out of the 4 he has. Well…actually as I write that, I don’t know how “prepared” you can be to get news like that….
Anyway, we are still praying. We are still encouraged by your words. We are still praying for a miracle that the test results will be better than we imagine. We are still holding onto the chance that Brooklyn’s test could be a false positive and that her bloodwork comes back “normal”.
I have found comfort in speaking with Laurie of the national MPS society. She has been holding my hand through this all. I also had the opportunity to speak with another mom who just found out this past July her daughter has Sanfillipo. She is 2 1/2. Her sister, 5 mo. is a carrier but does not have it. She lives in Roscoe…only 20 minutes away from my hometown, Rockford. We plan on meeting up soon. She is a Christian…a little futher into her journey with MPS. I hope our time together will be fruitful.
Keep praying with us. Pray for Brooklyn’s test results. Pray for Jayden’s results to be mild. Pray for our family who is crying with us. Pray for strength for Justin as he is having a difficult time with all of this. Pray for our marriage to be strengthened. Pray for wisdom for the Doctors and for us as we begin our journey living with this. We are not gonna stop and grieve. We are going to live-just better than before. We are going to make memories. We are going to thrive. We are gonna let people see Christ in this, not defeat. We are not gonna let Sanflippo define our children or us, WE are gonna define it.
Thank you for your continued prayer and words of encouragement. God is using you more than you realize. We meditate on the words you send us cause we struggle finding the words ourselves. We love you!