Caring for Connor Mac
Donation protected
Our precious son Connor, is a happy, full of life, lover of all books, Thomas the Train and Lightening McQueen toys. He has a very rare genetic condition called Alstroms Syndrome. With our faith, the knowledge of the many doctors Connor sees and his strength, we have managed to overcome the many trials and tribulations Connor has had in his short life. Until recently, when our son woke up one day a completely different child. Connor began talking to himself, seeing people who weren't there, not wanting to eat, withdrawing, anxious and completely near catatonic. The Connor we once knew was gone-one of the hardest things we have had to face. Connor has been in and out of the hospital where he was tested for new seizures, had an MRI, a spinal tap and numerous labs and other tests. When everything came back normal we were discharged with no answers. When we returned to his pediatrician she asked if Connor had been tested for PANDAS. We were like what is that? She explained it and we were like wow-that sounds eerily similar. She told us that PANDAS is caused by Strep A-the same Strep that causes Strep throat and that the antibodies basically attack the brain. Scary I know; well two days ago we got the call he tested positive for PANDAS, which I am thankful for a diagnosis but we know we are in for a long road ahead of us. PANDAS often causes relapse and does not always respond to antibiotic treatment. Which is why I am here; my family needs your help. The specialist we are being sent to does not take Connor's insurance and we will be facing many new medical charges. The doctor is 2.5 hours away which will require gas for transportation, alternative treatment funds (such as IVIG plasma exchange). Also Connor may require new therapies and prophylaxis use of antibiotics for relapse or indefinitely. We are praying for complete healing and our smiling Angel back. Please consider donating to our son’s needs. I am linking websites for PANDAS and Alstrom syndrome which are both so rare.
UPDATE:
Today we found out that Connor’s strep infection has yet to be eradicated. He has be on antibiotics for over 30 days and a shot of penicillin last week. Connor’s Pediatrician is bringing in the whole family next week for us to be tested as carriers of Strep A and he will receive another injection of penicillin and will continue to receive shots of antibiotics for the next few months. (This is soo hard as a parent to watch your child cry out in pain and not understand why he is getting so many pokes!) Connor will begin a new antibiotic today and we continue to pray for something to work and rid him of Strep and the brain inflammation. At this time Connor will not be returning to school and will be home bound until the doctors can rid him of the infection. I will not be able to work indefinitely and did increase our goal. Please know we are grateful for everything you have done so far and will continue to do. Friends and Family just keep sharing; we love each of you.
Organizer
Amber Berry
Organizer
Columbus, GA