- Tarah OSullivan
July 1st Update
Update July 1st, 2019
Drake is finally starting to get back to his baseline for seizures, thank Jesus. The last few weeks have been really hard. We fear Drake is going back to the cycle of walking on egg shells every few days, due to the antibiotics not giving us good seizure control anymore. We are still working with a team of researchers out of Alabama trying to figure out what the antibiotics were doing beneficially for Drake’s brain. As we all know research takes time, and we are still combing through possibilities. This group has been an absolute God send, as they have completely taken on Drake as a pro bono case and we could not be more appreciative of their efforts. We know it is only a matter of time before we find the missing piece there.
I am sorry for not updating sooner. After Drake’s most recent crash, and us coming home separately from the kiddos from our beach trip, we needed some time as a family to just be “normal”. Make breakfast, and play outside together. We took the kids for a family night at a local go cart track and let them drive bumper carts and play arcade games. Our three bigs are always so patient and kind with Drake, and after he has such a hard time they all start to have the hard “questions”. “Is Drake going to get better?…. how long will you have to stay at the hospital this time?…. is Drake going to die?”….
I never thought we would have to talk through death so much with our precious babies… especially trying to help them process at such a young age. Death of a pet, maybe, even death of a loved grandparent is hard enough, but trying to help explain the possible death of a child… especially their youngest sibling…. some days we just don’t have the words. I am so thankful God has given us more time with Drake. Every time we hit these horrible lows with him.. we all hold our breath, because we know how quickly it could be his last.
We constantly try to encourage our babies, and ourselves, that we don’t have all the answers, only God does, but we are to continue to pray through the good times, and we cling to our heavenly Father even more when the bad comes. Sickness is not how God intended this life, and he wants nothing more than for Drake, and all these babies to heal. We keep our faith, we keep our fight, and we love hard every day in-between the hard and the healing. Because that is what this life truly is about… the middle. The beginning is gone, the future is coming…. but life happens during the hard, and the happy. They seem satisfied with our answers for now… I pray God continues to give us the words to make this journey easier on them…
We are working on a documentary right now. Please pray we are able to give Drake a voice and also allow his story to be told in a real, raw way. His disease is ruthless, and if we only speak of the good… then we only allow him to suffer in silence. I do believe, and I say it all the time, if people truly knew what these children had to live through they would DO something. There would be no funding hang ups, or lack of research. They would find their voice to help give Drake his. And I do feel God is, and will continue, to make a way for better treatment using these precious families that stand up with us. We have so much hope in the Gene Therapy Project and the shear possibilities of what is to come.
Please pray over the next few weeks. We have a lot of decisions coming with the project, and we are excited to see God continue to map out the direction. He is truly bringing some amazing opportunities together, and we can not wait to share the details when they are finalized. Pray for Drake to find his footing, and that his days are stable moving forward with healing in his path. Pray for strength and discernment for Eric and I, and all involved as we continue to press on. I continue to ask as well, please pray how you can get involved. We absolutely need your support to continue to push this project into treatment for some many children waiting on help.
Thank you for loving our boy and praying with us for change for NKH.
All our love,
Eric, Tarah, littles and Drake