Moedubbayous

Our sweet boy is back in the room with us and starting to wake up. This is a longer post but we want to keep everyone updated. Today’s big tests were his MRI and ABR and we just got his results: His brain MRI. This is the test we were most anxious for as brain volume loss is expected in sanfilippo as heparan sulfate damages brain cells and causes cell death. Results: Stable and unchanged. No volume loss. The ABR test is a hearing test that can be given while he is sedated. This is important because Clark is unable to partake in a traditional hearing test where he would be expected to respond to sounds through headphones. At Clark’s baseline test one year ago, he was diagnosed with hearing loss. The audiologist took molds of his ears and told us he would need hearing aids. At Clark’s 6th month tests, the ABR results showed that his hearing had improved. He was still unable to hear certain pitches, but his audiologist said hearing aids were no longer necessary. His audiologist just came in and gave us today’s results: NORMAL. No detectable hearing loss. His brain responded to all sounds and pitches at all volumes. To say this made us emotional is an understatement. Even the audiologist felt it. She said this is the first time she has seen someone with the level of hearing loss that Clark had completely heal. We don’t take this opportunity for granted. Getting results like this gives us so much more hope and motivation to keep fighting to get these treatments available to all of our kids. These treatments work. It’s frankly not remotely debatable at this point. Children are being allowed to decline and suffer because of outdated policies and regulatory red today. Today we rejoice. Tomorrow we keep fighting. Thank you all for your support and walking with us on this journey 💜 “Rejoice in the Lord always. I will say it again: Rejoice!” - Philippians 4:4

The Julian Sayin conversation is fascinating. Went from Heisman favorite after the regular season to a big part of the fanbase wanting to go QB portal shopping all in the span of two games

What’s your favorite Ohio State vs ❌ichigan memory?

This is easily. 1 vs 2, Troy S❌ith Heis❌an and Cha❌pionship appearance on the line. The wolverine killer drops a dime to Ted Ginn Jr. 😤😤🌰

This is easily. 1 vs 2, Troy S❌ith Heis❌an and Cha❌pionship appearance on the line. The wolverine killer drops a dime to Ted Ginn Jr. 😤😤🌰

This is easily. 1 vs 2, Troy S❌ith Heis❌an and Cha❌pionship appearance on the line. The wolverine killer drops a dime to Ted Ginn Jr. 😤😤🌰

This is easily. 1 vs 2, Troy S❌ith Heis❌an and Cha❌pionship appearance on the line. The wolverine killer drops a dime to Ted Ginn Jr. 😤😤🌰