At this time the changes are minimal. However, he went through 6 weeks of illness which not only affected his seizure activity, but also the cold medications had a negative interaction with his seizure medications as well, heightening his activity. So he had a rough patch which made it tough to truly judge any overall improvement. The first 4 weeks he was on the oil (before he was ill) he experienced a 9-day break between seizures. THAT was SOMETHING (typically we get 2 to 4-day break between seizures).
Without the grant checks, we could not afford the oil - even at the reduced cost. My husband is the only one who can work so that I can stay home and care for Philip Austin. His real dad does not help in any way aside from carrying him on his medical insurance. However, every 8 or 12 weeks I am forced to call and resolve sues due to the Co-pays of his monthly seizure meds being so costly. We recently switched pharmacies as it was about $1300 for the month. Presently we are struggling as we have about $400 worth of seizure medication sitting at CVS, but my husband doesn't get paid until next week. It is always a juggle for us like this, as he is on so many medications.
I gave up my career to stay home and insure my son received the 24/7 emergent care he needed. My husband is the only one working to support us through this medical nightmare. EVERYTHING that we do...we do to insure Philip Austin survives another day. His doctors have continued to inform us they have run out of non invasive options for him, and don't believe any invasive options hold positive for him either. YOU have offered Philip Austin HOPE, where others had nothing else to offer. His sisters have been (literally) breathing life into their brother, operating life saving equipment., and pushing medications since they were 11 and 12 years old. They are now 24 and 25. I have been carrying my son through this trench and refuse to climb out without him.
I have had to look into my son’s terror-filled and starved for oxygen eyes while breathing the breath from my own lungs into his. Philip Austin wants to have just SOME of the quality of life that is TYPICAL for a young man his age. We have each/all been robbed of so much within our being who we ARE to and for Austin. We just want the opportunity to see this sweet baby have a chance at LIFE. To get to live his life and with some dignity and quality. We have seen him robbed of so much already since onset of 9 years old and he is now 21.
You are able to offer him what we cannot, a possible answer to his prayers. Hope for a better life. Control over seizures which rob him of so much. The trickle down effect from the possibility of quality gained to Austin’s life. Joy in witnessing it for him....it's just too immeasurable to express to you in man's words.
Philip Austin’s Story