Jacob Harper, 24, diagnosed with ALS in March, 2022! Fighting for a cure through a clinical trial at Ohio State University! "Genetic FUS-Gene Mutation" (P525L)
My handsome boy! 💙🥰😘
I love this kid with all my heart!
He doesn’t deserve this dreadful disease, (no one does), but he OWNS it! Jacob is always the first to say
#Godsgotthis
and
#NottodayALS
He is my
#Hero
#EndALS
UPDATE:
Jacob‘s vitals have returned to normal! His pulse, O2, Blood Pressure… everything is normal!
All the CO2 is gone, the pneumonia is reduced to a minor “community virus” that can be treated with light antibiotics!
Trachea scheduled for tomorrow at noon!
#EndALS
#ButGod
Today, one of our Mountaineer ALS Warriors gained his wings.
@SethPoling10
, you and your family have made amazing strides for ALS advocacy and awareness. We will NOT let you down brother!
#nottodayals
If you know Jacob, then you know his love! Blakelei says he’s so sweet, she just loves him! (She’s AMAZING!!!) When mom and I arrived, her iPhone was lying next to him playing Chris Stapleton music! 🥰
Even with a tube down his throat, he’s flirting! 😍🤣
Jacob is doing great! At time of this post, they have turned off the vent and switched to CPAP. He's breathing on his own. Yesterday he did this for 4 hrs! Mom and I went home and got his iPad, which allows him to talk with us using his own voice! Thanks
@TeamGleason
#EndALS
May is
#ALSAwarenessMonth
. Our family was touched by ALS in March of 2022 when our 23 year old son, Jacob, was diagnosed. He had participated in the
#IceBucketChallenge
7 years earlier. Our ALS is the super aggressive P525L FUS gene mutation.
#TeamJacobWV
We are back home! Praise the Lord, Jacob is fine! We just need to keep him hydrated and get his slobbers under control!
Thank you all for your calls, texts, and most of all, your sweet prayers! We love you all so very much!
(Pic is from Jacob’s onset - Nov ‘21)
If you see Jacob, remember… he is not mentally disabled or hard of hearing… he just has a trach and can’t use his voice (right now).
We have had a few visitors who think they need to shout at him. His ears work just fine! 🤣🤣🤣 (and so does his brain)
CLINICAL TRIAL… Our visit to OSU was flawless! From the initial blood draw to Dr. Kolb’s final check up, Jacob is definitely improving and doing quite well! They are able to see (and feel) movement in Jacob‘s arms, legs, and shoulders! AND his breathing is improving! 
#EndALS
Jacob wasn’t well, and we had no clue! Our Doc told us to consider the trach sooner than later, we should’ve listened!
ALS friends, LISTEN to your Doc! He wants what’s best for you! Powerchair, lift, feeding tube or trach. It’s all to help you live a longer more satisfying life!
As we ready for tomorrow's trip to OSU, I am reminded that
#Godsgotthis
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 (NLT)
#EndALS
#Ulefnersen
#ButGod
#ion363
#Jacifusen
Jacob received an AMAZING surprise today!
This unbelievable gift is from "J.T. Cure", the bass guitarist for Chris Stapleton (and Jacob's hero!!)
It's JT’s personal bass that he used on their Mexico tour! 💙💙💙
#EndALS
I believe with all my heart, THIS was the scene in that hospital room last night!
One of the nurses said “That was the hand of God in there!”
Another claimed a “Miracle”!
You just don’t come back from where Jacob went!
#ButGod
Jacob decided he wanted to go out, look at lights, and spread a little Christmas cheer with our local law enforcement!
Thank you to a few of Putnam County’s finest for hanging out with us for a few minutes and letting us get these awesome pics!
Merry Christmas!🎄🎁 ✝️
Day 2 of the trach. Jacob’s vitals are near perfect! He’s feeling a bit of anxiety and feels like he’s choking at times. He’s not, this will just take some getting used to.
They tell us, this is normal, and could take a few weeks for him to fully settle in.
#EndALS
#ButGod

Last night, we prayed for something new today! It is so awesome to see our prayers answered with such obvious execution!
“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.” Matthew 7:7 ESV
#Godsgotthis
#ALS
#ion363
#Jacifusen
#ButGod