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Noah’s Story, Cincinnati, OH (2026)

11/14/2025

It’s been a while, so here’s an update! We saw an amazing Geneticist at Cincinnati childrens (the one we had that helped us SO much had a baby and resigned…totally can’t blame her!)

We had been talks with cardiology as to if the mosaic KRAS gene was affecting his heart where the compression was. He said if it was, this is the first he has heard of that happening but wouldn’t surprise him because it’s Noah lol. So the geneticist confirmed that is more than likely what it is, and also confirmed she had not seen it in this particular area either! She also said Noah has Encephalocraniocutaneous syndrome explaining the multiple aneurysms in the same area and the lipoma on the inside of his skull and outside on his neck (2 separate ones) in the same area but not connected. Also oculoectodermal syndrome and Schimmelpenning-Feuerstein-Mims Syndrome explaining the vascular anomalies as well as the multiple odd looking skin lesions we see on his body (mostly his legs; but his chest, back and arms pop up with some at times). She said the Mekinist he is on, that was his last hope almost 2 years ago, is the absolute best thing to treat everything going on.

This is all super awesome to know! The next thing he has coming up is an MRI/MRA of his brain and CT of his heart taking place on December 22 😊

Right now we are having issues with insurance for next year. Cincinnati childrens only takes 2 marketplace plans (caresource and medical mutual) we went with medical mutual because they cover Noah’s medications he needs, but caresource doesn’t. Well Cincinnati childrens as of now has not renewed their contract with medical mutual for 2026. PLEASE pray they renew their contract with them as all of Noah’s many specialists are here. If they don’t, we will have to transfer to Dayton children’s who from what I’m hearing isn’t as good as Cincinnati and it’s over an hour trip. God can do anything with anything! I will post an update in December after his MRI/MRA & CT come back 🫶

05/06/2025

It’s been a while! No news is good news though they say! The only update is that we met with Noah’s cardiologist (who I would recommend to anyone, this guy has helped advocate and fight for Noah like no one else). He said he is super happy that the progression of Noah’s hypoplastic aortic arch that has caused moderate restriction of blood flow to the body from the aorta has seemed to halted from getting smaller! It’s stayed the same in the past 6 months…and we haven’t been able to say that for a while! I did find out something I didn’t know. I thought Noah’s aorta came off the heart and went towards the right instead of the left….his comes off and goes towards his spine, which explains why they hear a murmur. All of the things with Noah’s heart are sooooo complicated that they don’t feel comfortable doing heart surgery on him until he is almost at/at his full grown adult size since they will need to put some parts in there that won’t grow with him to correct the extensive things with his heart. In his words “Noah is 1 of 1, there’s no one I’ve seen like him” He said if Noah’s heart condition stay stable for the next 10 years, then we can talk about surgery and getting everything corrected! We will keep monitoring his heart and brain with MRI’s every December =)

Please continue to pray he stays healthy and all of his conditions with his heart, brain and malformation stay stable!

02/08/2025

Noah had his MRI of his brain and heart and in short nothing has gotten worse (which is a blessing). Everything is relatively similar to last spring…that being said, it’s still a bunch of rare things. Here’s what’s up with his brain and heart!
🫀Hypoplastic aortic arch (the main artery that carries blood from the heart to the body is abnormally narrow) this affects about 0.025% of people, so it’s uncommon

Tortuous (abnormally curved and twisted) aortic arch this affects 2 in every 100,000 people, so it’s uncommon

Left sided aortic arch

Aberrant right subclavian artery. This affects 0.5-2.2% of the population

Ductal diverticulum with left ligamentum arteriosum (look it up, it’s hard to explain) it affects less than 1% of the population, it commonly affects a right sided aortic arch with a left aberrant subclavian artery, Noah has the opposite making it even more rare.

Common origin of the bilateral carotid arteries meaning his right and left neck arteries(carotid arteries) share an origin where typical anatomy shows the right arm and right neck sharing an origin and the left neck having its own.

Aneurysms still noted in both subclavian arteries

🧠 crowding of foramen magnum- this pushes cerebellar tonsils out of the skull through the opening where the spinal cord is. This affects 0.1-0.5% of the population and is associated with Chiari malformation (which he never has had, he had the surgery to remove a non cancerous lipoma from that area)

Moderate restriction of CSF (CSF is super crucial for your brain health)

Tonsillar pistoning (up and down motion of cerebellar tonsils with each heartbeat)

He still has his lipoma in his brain, but it’s not grown praise the Lord! It’s still 4.7mm (when he got his brain surgery it was 12mm)

He still also has his brain aneurysm as well

That’s just his brain and heart. He still has (and will always have) his mediastinal Veno-lymphatic malformation, tracheomalacia, he’s immunocompromised, Pectus carinatum (in short a bird chest, which isn’t super uncommon), autism and sensory processing disorder.

All of these things noted have been what we have known, and what he has been living with…which is a pure miracle he’s alive! Currently, surgery isn’t an option for him. The only thing medically the doctors are doing/ can do is continuing to watch. This goes back to him being weeks old in the hospital and me reading psalm 118 to him and having verse 17 written and above his bed
Psalm 118:17 KJV- I shall not die, but live, and declare the works of the LORD

Noah is one special, rare kid who is, has been and always will be in the palm of God’s hand. I wouldn’t have him any other way, he’s our miracle man

12/31/2024

2024 has been the most calm year for Noah! The fewest ER trips, fewest blood draws, fewest MRI’s and CT’s and X-rays, no hospital overnight stays for the first year ever, fewest sick visits at the doctor, the most stable his rare conditions with his malformation, hypoplastic aortic arch, immunodeficiency, brain aneurysm and heart aneurysms have been!
Reflections on 2024:
At the very end of 2023 Noah started a new medication that was believed to help his worsening heart problems, this was our last Hope medically….and it’s worked! Things have been stable and unchanged!

We found out that the lipoma in Noah’s brain that he had brain surgery to take out in 2022 is slowly growing back. He will get an MRI 2/20/25 to check on that as well as checking on his heart conditions.

He started school and has been absolutely THRIVING since then academically, with his speech, and socially!

We got to watch the eclipse!

He broke his wrist in 2 places and through a growth plate. He just had a 6 month follow up X-ray to check on that and it’s completely healed, and his growth plate is fine!

Last pic is today, with his favorite person in the world, Daddy!

We are looking forward to 2025! Please continue to pray for Noah and his health to stay as great as it’s been! I’ll update everyone in February after his MRI unless something unforeseen happens before then! 🫶❤️

09/30/2024

NOAHS MEDICINE IS NOW APPROVED! I just got a call from the national board of reviews and they said they overturned insurances decision! He has been off Mekanist since August 28. Since then he has had a more progressive cough, his hair has actually darkened back up a bit, his veins in his face have been more visible. Lord willing we can order it today and get him back on it within the next couple days! Thank you all for praying! God is good!!!

08/23/2024

Asking for prayers for Noah’s medication AGAIN! We got denied for Medicaid this year, so at the end of July it ended. The doctors sent the RX to the specialty pharmacy Anthem requested it to be sent to….and anthem denied it. He will be out of medicine in a week, and the doctor’s office said he may have to go a while without it until they can figure it out. This medicine has so far been great for him. He has a heart CT September 3 to check to see exactly how this medicine has been positively affecting him. When they checked in March, there were subtle changes in the right direction and that was only just under 3 months on the medicine! The last doctors appointment he had in July he had a normal blood pressure on the first try for the first time ever!!!!

Please pray that this medicine can be approved through insurance quickly/that they can figure something out to get it for Noah! This is the 3rd time this year we have had to go through all of this 😵‍💫

07/06/2024

Hey friends, it’s been a minute since we have posted an update! A few weeks ago Noah had a trampoline accident that led to both left wrist bones being broken across and up (and through a growth plate) it was a doozie! Besides the first few hours of it happening, he hasn’t cried or told me it hurts, he’s a tough guy!

We saw the malformation clinic for a 6 month follow up of being on his medicine and his bloodwork looks the best it ever has! The CK level that was so alarmingly high (in the 500’s) has come down to the 300’s and it will probably drop even more by the next round of bloodwork!
Despite telling us his hair could turn blonde as a good side effect, they told us they’ve never actually seen anyone’s hair turn blonde. Noah is the first, leave it to him lol. They said usually it thickens or thins or falls out!

There are some pretty big secondary insurance things we’re going through and trying to get approved, so please keep that in your prayers as well as Noah’s wrist bones to heal up properly. They said because of it being through a growth plate he could need extra therapy. His next heart scan is on September 3, and this is a huge anticipated wait for us and his cardiologist. Unless something wild happens, that will probably be our next update 🫶❤️

05/04/2024

THANK YOU ALL FOR PRAYING!!! There is power in prayer! The day after I sent out the prayer request I got a call that I can pick up Noah’s medicine Friday morning! I got it today and all is well! He only missed 2 doses! God is sooo good! I can’t even thank you all enough for praying for our boy ❤️

04/30/2024

Update** Now I tried contacting insurance again and they said they can’t discuss Noah’s information with me because I’m not an authorized user listed on his behalf. I said how is that possible since I am the plan holder, and his mother (AKA legal guardian). They said the doctors office is the only authorized user they can share information to due to HIPPA…WHAT?!?!

Please pray for our guy! He is doing great….but our insurance is giving us trouble again! In December we spent 15 hours on the phone between insurance, pharmacies and doctors offices to get his Mekanist. This medication has worked so well for him so far! We have experienced a side effect already, but not a bad one! It’s turned his hair from brown to blonde! The compression on his aorta has gone from moderate-severe to mild-moderate! Our insurance has approved….(not paid a dime for though, his Medicaid has picked it up), his medication December-March. Now when I tried to order it this month insurance is denying it.

They told the malformation clinic something internally changed with my insurance (I was not notified anything was changing), and that’s the problem. So we have to go through the whole long process we did in November and December doing prior authorizations, them denying it again, submitting an appeal that they will probably deny again. I’m just not getting it. My insurance will pay $0 for this medicine for Noah anyway…so why not just run it through like they have been and having Medicaid pick it up?! AND HES OUT OF HIS MEDICINE AFTER TOMORROWS DOSE, and insurance won’t allow for a partial refill until the problem gets resolved since it’s a solution that’s mixed and partial would be one full bottle which is a 15 day supply.

Please pray this process happens quickly. This medication was our only hope since heart surgery wasn’t an option, it was a gamble not knowing if it would help or not, and so far in a short time it’s shown slight signs of improvement on all heart things…so I am just worried of undoing what good has been done if insurance pushes this a month how they did in the first place!

I trust in the Lord and know he will work it out, my flesh still gets frustrated at times though!

03/19/2024

Noah had his MRI of the brain and vascular MRI of his heart last Thursday! Praise the Lord the lipoma hasn’t grown too much more, like not even 1mm!! The aneurysm in his brain is unchanged in size.

The heart basically looks the exact same, there may be a couple spots that look a tiny bit better, but basically nothing has changed in 6 months which is a huge win! The aneurysms in his heart are unchanged in size. AND there were no hidden surprises for once ever! Typically Noah is good for at least one surprise, but there were no extra things!!! So all in all, answered prayers!

We did some bloodwork as well and his iron was low, so we’re starting him on a liquid iron supplement to see if that’ll boost him! He has another level they are keeping a close eye on that has to do with muscle damage in general, but they’re keeping an eye on things with the heart, brain and general muscle damage. He’s super active and his normal self, so his level isn’t really making the most sense. Normal is between 22 and 210 and he is at 522.

Please pray that they continue to see slight improvements with his heart, that his brain lipoma doesn’t grow anymore, and that this CK level goes down!

Noah’s Story

11/14/2025

05/06/2025

02/08/2025

12/31/2024

09/30/2024

08/23/2024

07/06/2024

05/04/2024

04/30/2024

03/19/2024

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