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  • Tarah OSullivan

May 2nd - NKH Awareness Day

Today is NKH Awareness Day. It is a day that families affected by NKH across the world rally for awareness and funding to help bring change to this terrible disease. If I am honest, we have been so busy with Drake, school finals, and trying to plan for this next phase of research that we have been just trying to survive.

Drake’s seizures have been really unpredictable these last few weeks, The really mean, scary seizures are back. The last few days he has been holding his breath for long periods of time before he can finally gasp for air. The kind of seizure where his lips turn blue, and you see every vein in his tiny cheek, all while he is thrashing around trying to get his brain to unlock his airway so he can take a breath before he passes out. I can’t imagine the fear he must feel every time a seizure hits him. Every hour waiting for the next one, watching his eyes water as he starts to feel one coming on, and then holding him coaching him to “breathe baby, try to focus on breathing…you are doing great…PLEASE BREATHE DRAKE!”…. it changes you as a mother to watch your son suffer like he does….knowing that more are coming and I can’t take it from him.

We haven’t been sleeping much, as his seizures hit all throughout the night as well. We have to be ready to jump into action at the first sound of his breathing changing. That is why Drake will probably always sleep by our bed. If he throws up, which most of the time the seizures trigger some form of gagging, then he could aspirate and we only have seconds to clear his airways before he could become critical.

I woke up this morning, thinking of all the things I needed to be doing today. How to balance the needs of the kids today and try to focus on getting blood drawn for Drake so we could possibly gets our numbers back on Monday. Also, trying to plan something for NKH awareness day, and all the emails I needed to tend to for the projects already in place. I was checking my phone, groggy trying to wake before my feet hit the floor. I saw a message from a mother…. a mother of a child with NKH…. not asking for prayer, or encouragement, because her child was once again being hit hard by this terrible disease, but…. letting us know he was gone……

I couldn’t stop the tears as I climbed out of bed to go wipe my eyes. Birkley was already up getting ready for school in our bathroom, so I knew I had to walk quietly to grab the tissues. We hide a lot of the pain we face each day, because they need to stay focused on being children, not fearing what tomorrow can bring.

I can’t explain being apart of this world…. the world where you are in a room full of strangers you have never met before, but connect with them immediately. This room is so uncomfortable, and cold and hard. You all form a bond, because it is unlike anything you have ever experienced or anything you have ever seen in your nightmares. You look to each other to lean up against, because you are weak and honestly scared. You learn to love them as you watch them fight day in and day out to make this room home, just like you are trying to do….. and one by one… the door is opened and they are called out. You all fear each time the door opens, because as much as you hate this room, you are praying it is just a holding place and not a final destination. Someone calling you out of the room means it is too late…. your child’s time has come, and everything you fought for in that room… the small comforts, the hope drawn on the walls, the thought of moving your child into a big nice forever room with their pictures on the wall….. all that will be gone.

Pray for our families living, and the children dying with this disease. Pray for a cure…. pray how God can use you to help us. Remember the children that have lost their lives tragically to NKH today. Today is about NKH awareness and hope, but it also has been carried on the backs of so many children that will never see the cure their families disparately fought for.

Please share…. please pray… please do something to help us save our son. You are healthy, you are alive, and you have a future…. that is so much more than most of these children right now… fighting to see tomorrow.

  • All our love,

Eric, Tarah, littles, and Drake


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