Well... someone keeps defying all odds against her. The doctors obviously have no clue what they're talking about when they said that there's no chance of her lung reopening because it now has (either partially or fully we don't know because we haven't had an x-ray). Madison has been the happiest we've ever seen her the past two days and it's most likely because of her lung reopening. I've posted an update and a video (see the gofundme link)... Thank you for everyone's support and the continued prayers. They've obviously continue to work!
There is nothing stronger than the human spirit and our fight to live! Stay strong and never give up! I do not have kids of my own; but I couldn't even imagine what you and your family are going through! When I read about stories like this it almost doesn't seem fair or right! One of my biggest fears of having children is the idea that if something were to happen to them I would be power-less to help them or switch places with them! I know every loving parent's worse fear is being powerless to take away their children's pain! Prayers sent!
Thank you for the prayers and donations!!! This has been an amazing response from this forum! So far she's been fighting this thing out. There's no current gene therapies available for her and since she's already in a somewhat unstable condition they won't accept her into any of the available trials. It's simply a daily struggle for her and even though the road was looking clearer, she has recently took a couple of steps back. She has DESAT twice in one day recently and had to be brought back and we're not sure what's actually causing it because she's actually got both lungs open right now. AGH! This is a horrible disease, I know that! This has been the biggest emotional roller-coaster of my life. The unknown is what's been the hardest to swallow. We understand the underlying disease cannot be fixed and it's only a matter of time but we're given constant hope then it gets taken away seems like. We've left it all in God's hands and pray daily for Him to ease our hearts, minds, and souls. Trying to understand this thing will drive you insane! Thank you again everyone for the kind words and constant prayer! It has all helped greatly! Cannot express my gratitude! I try to update the gofundme website as often as possible but don't get to do it here as often. Just wanted to post a quick one here!
Thank you everyone for the love and support through this battle!!! Our angel gave us the fight that no one expected! We have all learned so much from this little girl that we will take with us for the rest of our lives. Her grandpa got the best present he could for his birthday this past Saturday... He got to meet his granddaughter in heaven. We now celebrate her life that she had and the extra time she gave us! Thank you all so much for everything! Please help us now to raise funds for funeral costs and we will update on GoFundMe website with the arrangement details soon! Love you all!!! Give your kids a hug and a kiss and never take your life for granted! Enjoy every second of it! May God Bless every single one of you!!! NSX PRIME MEMBERS ARE THE BEST!!!
I'm so sorry to hear that she lost the battle against this horrible disease. The silver lining is her passing on her grandfather's birthday. God always has a plan. I hope you and your wife can find comfort and peace within your minds and hearts. God Bless you and your family.