Please continue to pray for this precious family. They have been doing a great job of updating their blog here. A Facebook group has also been started for them: Prayer Group for Jonah Alexander Williams.
Patrice has listed some specific prayer requests for the upcoming days on their blog. They are as follows:
- that Jonah will have the Simplex version of EB
- that his mouth and throat look healthy and whole
- that he is not in very much pain now that he is on lower doses of pain medicine
- that his little body resists infection (STILL the biggest concern and greatest danger)
Several readers have left links for Matt and Patrice to look at regarding their own personal experiences with EB, and how they have learned to live with this disorder. We need to continue to give them hope like this. It was awesome to see how one woman had been diagnosed with the most severest form of it and she had reached the age of 30, gotten a degree, gotten married, and had 3 children!
Matt and Patrice, if you read this, know that you all are on our hearts and our minds and will continue to be. We are there in spirit, even if we cannot be there in person. Please do not let hesitate to let us know what we can do. We love you!