Original post date: June 2019
Jack finished his participation in Baylor’s ML4 research study program, and we couldnt be more proud of him. This was our second time out there, if you remember we made this trip in December 2017, with all THREE boys. #oy We opted to leave Liam and Theo at home, and as much as we missed them, Jack loved being an only child for a few days.
We decided to spend an extra day or two in Texas and do some sightseeing. We made the 3 hour round trip to Waco, TX to check out Magnolia Market/Silos. I enjoyed it, but I don’t think I would ever fly from Ohio to Texas to visit, if that makes sense. I was still thrilled to cross it off my bucket list. We enjoyed a few bake goods from Magnolia Bakery, and the boys enjoyed their shaved ice from a local food truck! Sunday, we hit up the Dallas Aquarium, by far, one of the best we’ve been to! Jack loves aquariums, easier for his eyes to track as the fish slowly swim back and forth in the tanks. The weather was so much better this go around, too! The boys were able to enjoy the hotel pool! Dr. S was very impressed with Jack’s swimming abilities, that Im hoping this prompts Brett to put a pool in at the new house!
This particular study focuses a great deal on the neurological side of ML4, and how the disorder effects the brain. It requires an MRI of the brain, and usually takes about 1-2 hours from start finish. I’ve said it before, and I’ll say it again, I will never get used to seeing Jack go under. The tears are fewer, but they are still there. The look on his face this go around was sheer anger, and my mama heart wanted so badly to pull him from that table. I am always so impressed at how well he recovers from anesthesia, and the minute you get the text “he’s waking up” it’s a full on sprint to his bedside. We are still waiting for the results, but we are praying things look the same, if not better than before. Jack also met with several therapist, who all evaluated him. He did pretty good, considering these were (mostly) all new faces, he engaged and participated, showing them his incredible throwing arm!
I think by far the most memorable moment for me, was our meeting with Dr. S. While doing his examination, he placed a ball and a rattle in front of Jack on a table. He asked Jack for the ball, and Jack selected the ball and gave it to Dr. S. Now, Brett and I had no doubt he would be able to do this (Jack loves to throw balls etc), but when Dr. S. asked Jack for the rattle, Jack took a minute, then handed him the rattle! Dr. S. rotated the objects, and again asked for the ball and rattle two more times, and Jack correctly handed him the appropriate items. No words. We were so excited! It’s these little moments, that will always sustain us in the darker times, the moments we hold onto until the next big thing comes along. I know I’ve touched down some on the testing we had done, and we know that Jack has Ml4, which is caused by the mutation of two genes; one known MCOLN1 (Ashkenazi Jewish gene) and one undocumented gene. We are hopeful that Jack’s undocumented gene, will prove beneficial as he continues on his path. We’ve been told, like many other diseases/disorders, there is always a bad/better/best scenario, and I think Jack falls into the better category. We will cling to that, praying for those who are on the lower end of the spectrum, as we continue to give thanks to God, for knowing this is where we need to be, asking for strength and understanding as we move forward.
We are grateful to the individuals who are working hard to better understand ML4, and ways to minimize the progression. The many Doctors and Scientists, who look at our child, not as “subject #5” but as Jack, the adorable curly haired little boy. To the individuals who donate to the ml4 organization, so families can participate in these studies, without the additional financial burden. To the friends and family who support us, with love and prayers, we owe much to all of you!
Continue praying for Jack and others living with ML4, for those working towards a treatment and someday, God willing, a cure.