A good friend, fantasy sports competitor, and former colleague of mine at J.L. Mann High School has a site up about his two kids who have gone through what I consider to be truly unbelievable and heartbreaking circumstances. And yet their story has served to encourage me Spiritually as they continue to point to and cling to Christ in the midst of true hopelessness humanly speaking. Supernaturally speaking, God is doing a work of healing in their lives and of blessing in the lives of others who have prayed for them for years. He is also blessing parents who have consistently taught their kids, (and me) the answer to the question, “Is there anything too hard for God?” The answer always being “No! God’s hand is not too short to save those who trust in Him.”
I encourage you to visit the site and pray for Sami as she prepares to undergo the same surgery that her brother Nick had recently. Read the details. It will blow you away at what these kids have endured while trying to lead a normal life of school, sports, friends, proms. Below is an excerpt from their site. Find it here. God’s continued grace and blessing on you and your family Sam!
Sami and Nick have Ehlers-Danlos Syndrome which is a weakness of all of their connective tissues. It affects all their hollow organs, tendons, ligaments, blood vessels, and skin. The weakness of their ligaments does not hold their bones in place, nor allow proper support for their organs. Their spines are too weak to support the weight of their skulls. The weight of the skull presses their brains downward, out of the skull and into the spinal canal. It also allows the odontiod bone to retroflex backward, pushing it into the brain with every movement of the head.
Hints of this all began when Sami’s brother Nick was 7 years old and he began having dizziness, constant nausea, and near passing out spells. Soon multpile organ systems began to dysfunction. He was diagnosed with dysautonomia but no cause could be found. He progressively got worse until he became bed-ridden, unable to be in an upright position.
Two years into his seven year seach for a cure, Sami began to show organ dysfunction and severe head pain when exercising. She was also diagnosed with dysautonomia but again every known cause was ruled out. After four years of struggling to get better Sami progressed to being homebound with severe headaches and passing-out spells in her 11th grade year.
The top dysautonomia doctors in the world told us that they had no answers left to help them, but God is good and can do all things. One night we heard about another girl named Marissa who had the exact same symptoms and she was helped by two very special neurosurgeons in NY. Sami and Nick immediately got appointments to see them and the answers for all their problems were revealed.
We now knew why Nick was unable to be upright. His brain was being pressed downward every time he would sit up. A lifetime of this pressure and rubbing on his brain has caused permanent damage to his cerebellum and brainstem, thus the elusive cause of his dysautonomia. Sami was in so much pain because of the weight of her skull and the odontoid bone that was pressing into her brain with every movement of her head. Again, now we knew the cause of her dysautonomia. . . . . “We praise God in all things! God may not give us all that we want, but He does give us all that we need, Psalms 23: 1 “The Lord is my shepherd: I shall not want.”
Hit the link above to read more.