Golden Tempo went from last to first.
He passed 17 horses.
His jockey prays everyday and quoted Philippians 4:13 after the race.
Oh, and the horse has a cross on its’ face.
God is in control.
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 Children are being allowed to decline and suffer because of outdated policies and regulatory red today.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
In 1986, the American Medical Association published an article titled "The Physical Death of Jesus Christ". It details the entire process of Jesus' trial to His death on the cross.
In Luke 22, before Jesus is arrested, it is written that He was in great distress & sweating blood. Although rare, it is recognized as Hematidrosis, a condition caused by high levels of stress.
At the time, the crucifixion was considered the worst death for the worst of criminals. But this is not all Jesus faced. He endured whipping so severe that it tore the flesh from His body. He was beaten so horribly that His face was torn & His beard ripped.
A crown of thorns, 2-3 inches long cut deeply into His scalp. The leather whip used to flog Him had tiny iron balls & sharp bones. The balls caused internal injuries while the sharp bones ripped open His flesh. His skeletal muscles, veins, & bowels are exposed, causing major blood loss. Most men do not survive this kind of torture. After Jesus was severely flogged, He was forced to carry His cross while people mocked & spat on Him.
Crucifixion was a process meant to instill excruciating pain, creating a slow & agonizing death. Nails as long as 8 inches were driven into Jesus' wrists & feet. The Roman soldiers knew the tendons in the wrists would tear & break, forcing Jesus to use His back muscles to support Himself to breathe. Imagine the struggle, the pain, the courage...Jesus endured this reality for 3 hours!
The Gospel of John writes that after Jesus' death, a Roman soldier pierced His side with a spear & blood & water came out. Scientists explain that from hypovolemic shock, the rapid heart rate causes fluid to gather in the sack around the lungs & heart. The accumulation of fluid in the membrane around the heart is called a Pericardial effusion & the lungs is called a pleural effusion.
To the world, Christianity is as foolish as it can get. They believe it's for the weak. But when you are confronted by the reality of the cross, it's clearly not a pretty sight. It is brutal & horrific.
This is the weight Jesus carried. The weight of the sins of the world, all so that we can live. God's wrath is fully satisfied in Jesus. This is what it took. Repent & believe! Jesus is “God among us” in the flesh. Jesus is our Savior. Jesus loves you so much that He went through this spiritual and physical punishment for your sins and mine.
Jesus is the LORD, Almighty God, Everlasting Father.
Thank You, Jesus.
The world said this about Jesus.
“Some said, “He’s demon possessed and out of his mind. Why listen to a man like that?”
John 10:20
God The Father said this to Jesus.
“Then a cloud overshadowed them, and a voice from the cloud said, “This is my dearly loved Son. Listen to him.”
Mark 9:7
Jesus reminds us as His Followers
“—If they have called the master of the house Beelzebub, how much more will they call those of his household!”
Matthew 10:25
The world calls us crazy, but God calls us Sons and Daughters.