Jonah's Journey

Beautiful Jonah was born in February and, shortly after, diagnosed with a very rare genetic disorder called Late Onset Pompe disease. Preliminary testing is showing this will likely affect him later in life. Symptoms can include weakened muscles and breathing and, once presented, will require life long treatment to manage. Medical related costs have already accumulated due to extensive initial testing that is required at diagnosis and, to stay ahead of symptoms, continued testing will be required every 3 to 6 months. While we pray that necessary treatment will stay at bay as long as possible, we hope to build a net for the family that will provide some small comfort and support for when that time comes, particularly if sooner that expected. If  prayers are what you can offer at this time, we sincerely thank you for keeping Jonah on your heart and in your prayers.