New Diagnosis+Prayer=New Treatment

Today we got that call from the doctor that no parent wants to get....Jon's lumbar puncture found a rare disorder that is most likely the main cause of his cerebral palsy (CP). The new diagnosis is Idiopathic Cerebral Folate Deficiency (CFD). This is a degenerate condition if left untreated (or if the treatments are not successful), but if successfully treated, it can be a regenerative (regain function) condition.

It is a condition that occurs when the brain DOES NOT absorb regular folic acid therefore a medication (AKA FOLINIC ACID) must be given. Regular Folic Acid gets into the brain through a receptor. Sometime when the child is a baby (or in the womb), no one is sure, a virus comes into the body and binds itself with that receptor, therefore the body creates antibodies against the receptor. However if the doctor gives one of several special medications (FOLINIC ACID) it uses ANOTHER receptor to get into the brain as the needed folic acid.

This condition was discovered in 2004 and little is know about the limits/possibilities for regaining function. It seems that the older the child, the less function to be regained. However, a 2008 study had a 16 year old with CP who had just been diagnosed after starting to have seizures and he made miraculous improvements (no seizures, better muscle control/cordination, vision improvements, and learning improvements).

We will be in St. Louis today do more lab work so the doctor can choose the medication and dosage that is best for Jon. Please join us in praying for miracles!

For the eyes of the Lord are over the righteous, and his ears are open unto their prayers: but the face of the Lord is against them that do evil. --I Peter 3:12