Hello Friends,
I hope that you found motivation and gratitude last week for our Prep With Purpose .. Aries.
A six year old should be excited about picking their Halloween costume, getting ready to make his Christmas list for Santa, etc. It's not fair that instead .. little Aries is living with what doctors say is an UNTREATABLE CANCER! Him sick and his family uncertain if they will even be able to celebrate these holidays together this year. If you missed last week please take a moment to read the entry and at least lift Aries and his family up for a moment before you move along to this weeks person.
I have had a really hard time with this weeks entry. I can't tell you how many times I've felt literally sick to my stomach as I typed. I know life isn't fair. We all have "moments" where we feel that way. But after you read about this weeks person we are lifting up and for .. trust me when I say that your "not fair" will LIKELY seem pretty petty. There are things in this world I will never understand and what is happening to The Frost Family is one of them.
Prep With Purpose - The Frost Family
HOPE is something that is hard to have when doctors tell you that your child (her name is Riley) has one of the rarest diseases, shared with only 40 people in THE WORLD. Then to find out that one of the other 40 people .. is the newest addition to your family .. your son (his name is Harrison.)
Two children .. both diagnosed with a very rare genetic disorder called Infantile Neuroaxonal Dystrophy, or INAD. In short - INAD is an extremely rare, inherited degenerative disorder of the nervous system characterized by abnormalities of nerve endings (axon terminals) within the brain and spinal cord (central nervous system) and outside the central nervous system (peripheral nerves and terminals). In most cases, infants and children with INAD appear to develop normally until approximately 14 to 18 months of age, when they begin to experience progressively increased difficulties in walking, demonstrating unsteadiness and/or a tendency to fall. Few affected children attain the ability to walk completely independently before such symptoms appear. This disorder is terminal and as mentioned .. the life expectancy is only 5-10 years.
This family isn't totally unfamiliar with INAD. A relative (cousin) had it and lived to 13. The thing about INAD is that BOTH parents have to be carriers. Then there is only a 25% chance the child will actually have the disease and a 75% chance the child will be normal (50% of being a carrier and 25% of not even being a carrier.)
I can not imagine having one child that is "unhealthy" and given a life expectancy of only 5-10 years. But then to find out that another one of your children has the same rare disease. Two children .. both by medical textbook .. will be lucky to make it to their 10th birthday. That is what the Frost family is facing. See what I mean by .. unfair?!
I've read the family blog and I just can't grasp all of this. I encourage you to go back to the original entry and read backwards to today. Talk about a wake up to be GRATEFUL for the health of you and your family.
It was this line from The Frost Family that made tears steam down my face.
"Oh my god. I am going to outlive my child. How terrible is that?"
Or maybe it was when she said:
"I have lost the future of two of my children."
Or maybe it was this quote:
"I am going to lose 2 of my 3 children. How can that be fair? My sweet little boy isn’t even showing signs of regression. Yet. I know that will come. And this time, we will have answers. But it doesn’t make anything better. It makes things worse, actually."
My heart has literally been broken for this family since I found out about them last week. I wanted to go back to my "old method" of Prep With Purpose and write up an entry immediately. But they need ongoing prayer .. so I decided to wait.This week as you PREP for whatever your week holds .. take a moment to be GRATEFUL that you have the ABILITY to do so. Use this sweet family and these precious children as your motivation and more than anything please take a little time each day to lift up and for them.
I'm going to end with one more quote from The Frost Family blog. May this paragraph be a reminder that life is short .. life is fragile .. tomorrow is a gift. If you are reading this and you and your family are healthy please don't forget to thank God for how BLESSED you truly are!!
"I am hurting for all of my children right now, but also for myself and my husband. And I don’t know how you come back from something like this. Yes, I know…. Live for my kids. Make sure they’re happy. Make sure they see things, experience things. Obviously I am going to do that. But how am I supposed to keep a smile on my face? How am I supposed to look my children in the eye and have them believe me, when I tell them everything is going to be ok, when I don’t even believe it myself?
I suppose I will have to change the name of my blog. It's no longer just Riley. It is now both of my blue eyed babies. "
God Speed Frost Family ... I hope you feel this little extra love.
Stacy
There is a GO FUND ME PAGE set up for the family. As I always say .. if I don't know them I can't personally vouch for them needing the money. But in case you feel led to donate. I always include the link.
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