Drake is doing well. He has calmed down from the seizures we were seeing the week before. His weight has increased, so we are seeing some seizure activity right now, but after some adjustments on our end, we should be able to calm them back to less than 10 a day. Sadly, less than 10 seizures a day is what Drake’s good days look like. He can still have good awake spells, do physical therapy, and take his bottle with this many seizures. He still has clarity in between them, and is able to come out of them quickly when they stay under 10. This may sound shocking, but is truly a gift from the Lord.
As I was posting our cheeky fundraiser yesterday, I happened to see a post from another NKH mother. Her baby girl, Halle, had been in the hospital due to some sickness, and we had all been praying she would quickly get to come home. NKH children are so fragile that most of the time, a simple “cold” to an average child…means a hospital admittance for our kids. Our children have so much they are battling daily with this disease, that any extra strain on their little systems (sickness, constipation, diet or medicine change), has to be monitored by professionals due to how quickly they can turn critical. I thought this mother was doing another update on their progress….but it wasn’t…… the little girl had passed…. I felt a little bit in shock as I read the mother’s post. This beautiful little girl also suffered from NKH since birth, and she had fought so, so hard her 16 months of life on this side of heaven. She had been through highs and lows, setbacks and victories. We have watched her parents fight endlessly to care for her, and give her the best treatment possible. She was just one month younger than Drake…. she was living….until she wasn’t.
As I read her parents words of holding her as she took her last breathes, and looking at her beautifully made body in their arms I wept….I normally try to guard myself from the emotional roller coaster of this disease ….but yesterday… I mourned the loss of this little girl. I prayed for God to give them comfort and peace, and for Him to draw them ever so closely because only He will give them rest. I found myself sobbing…. because… the fear of this post being in our ever so near future, took the breath out of me….
Drake has good days, and we are so thankful to God for allowing us this time with him… but Drake also has a predestined timeline. When God calls our son home, in what ever short or long span that may be, I want to know without a shadow of a doubt, that we fought with everything in us to fight back against this terrible disease. We want to make a difference that will help children for generations to come to not have to experience this kind of pain, and hurt. There has to be better treatment, there has to better options…. these children should be playing with their siblings, and laughing at the wind, and enjoying the precious years of being a child….. not this…. not seizures, not injections….not blood draws and caustic medicines….not sickness and fear….
I have never been so thankful for our heavenly Father as I am now after Drake…. the thought of Drake being perfect and whole in Jesus’s arms is a peace that I can’t explain. And I long for the day that this happens… for all of us… I no longer fear death, but can’t wait for the day I get to meet my sweet savior face to face… But until God chooses that ending….we need your help. We need you to fight with us….please…. this disease CAN be cured….because it is so rare, it is just so underfunded….and the funding will not come unless we raise it…. please help us stop this… God is able to heal all of our sickness and disease, and He will in His perfect timing….. but He also expects us to act and to do our part. From now on, every update, every post, and every message we are going to put a link to our foundation website to donate…. EVERY DOLLAR COUNTS….EVERY DOLLAR GETS US CLOSER TO BETTER TREATMENT AND A CURE FOR NKH…. please don’t assume someone else is helping us…. please donate… we have the labs in place, we just need the funding… help us get there for Drake.… mountains CAN be moved by moving one pebble at a time…
Pray for this family…pray for this child by name… these statistics have names… they are beautiful children that have families left behind…
Pray we make a difference…
Love - Eric, Tarah, littles, and Drake
Thus says the Lord: “Keep your voice from weeping, and your eyes from tears, for there is a reward for your work, declares the Lord, and they shall come back from the land of the enemy. There is hope for your future, declares the Lord…”