-
@ dkpower
2024-12-05 13:31:31The book of Job has been one of my favorite books of the Old Testament. Reading the story of a man who had gone through so much anguish in such a short period of time has always been a source of encouragement and guidance for me. One of my favorite phrases from Job is when he says "shall we accept good from God, and not trouble?” Likewise the teachings of Christ and the modeling of His teachings in the life of Paul and the early church has always guided me when dealing with any hardship. Over the past two months I have had to rely on this more than I have ever before.
As it neared my daughters second birthday in June she had yet to develop a single tooth. With baby teeth showing as early as three months my wife and I knew this was not a normal occurrence. With the help of our pediatrician we meet with a pediatric dentist and had some x-rays taken of my daughter's mouth. The results showed us that she was missing almost all of her baby teeth. Our dentist was taken back by this, it can be common for toddlers to be missing some baby teeth but my daughter was missing the majority of hers. Our dentist met with some of his colleagues to discuss my daughter’s case and they determined that she may have a very rare genetic disorder called Ectodermal Dysplasia.
Ectodermal Dysplasia is a group of disorders that affects structures in the ectoderm during development. Hair, skin, nails, teeth, and more can be effected and in a variety of different ways. There are over 150 different types of ectodermal dysplasia and there are only around 7,000 known cases of this disorder worldwide. We have been referred to a genetic testing facility in order to confirm this diagnosis. We are fairly certain that she does have this disorder as she has shown signs of having other symptoms associated with this disorder; such as an inability to sweat and the one tooth she has coming in appears to be abnormally shaped. We will have to wait till October to have her condition properly diagnosed. What we know for now is that she will not develop a proper set of teeth, with the possibility of not having adult teeth. We are meeting with the dental school at UNC Chapel Hill this coming Tuesday to talk about some options they may have to address this. We are very grateful for this opportunity and excited to see what they have in mind.
If you could, please pray for my daughter. This will be a long road and she will face many challenges as she grows up. I know I will be praying for her to be able to accept this difficulty with a smile, because it is one of the most beautiful smiles I have ever seen.