Aortic Root Repair for Jameson Koehn.

Hi my name is Misty Akovenko and I’m trying to help my friends Jason & Maria Koehn fundraise for their son Jameson. This is copied from Maria's personal Facebook post.

Hello everyone,

I am posting today in hopes of help from any and all who can. We are asking for donations to help cover the cost of an aortic root repair for Jameson.

Jameson is in need of another surgical heart repair in his very near future.

The option that is provided in the US is far inferior to one that is provided as "the standard of care" in many countries around the world, just not the USA YET!!

This procedure known as PEARS (Personal External Aortic Root Support) was created by a man known as Tal Golesworthy.

Tal was also faced with a need for an aortic root repair some 20 years ago due to dilation from Marfan Syndrome.

For all who may not know Jameson was born with a condition known as Marfan syndrome.

Marfan Syndrome affects all connective tissues (i.e. eyes, lungs, joints, and heart,)

The part of the heart that connects to the aorta is called the aortic root. For a child the age of Jameson (3yrs) the normal diameter (sinus) of the aortic root is between 11.8mm-18mm, Jameson was last measured in August at 34mm!

The standard of care in the US is to cut out the dilated tissue.

During this operation they will need to: stop Jameson's heart and make the needed replacements. While making this repair the aortic valve will more than likely be damaged. The valve will then also need to be replaced due to the damage and will require Jameson to be on blood thinners and add the need of multiple more of the same repair through out the rest of his life!

The PEARS procedure is the placement of a mesh graft around the outside of his aortic root. The mesh will grow into and join the root and will strengthen the tissues. This procedure offers no need to stop the heart, no valve damage, no blood thinners, and no need for replacement EVER!! All of this is offered and at approximately 50% of the cost of the us option of just the surgery (no medications, no hospital stay, nothing more) here in the US costing $135,000.00

Our Insurance ( Blue Cross Blue Shield of ND #BCBS) WILL NOT cover the PEARS procedure as it has not been fully cleared by the FDA! Even with all the evidence proving this is the better choice!

In order for Jameson to receive the PEARS, we need to fly to London (this is the closest hospital that provides this procedure) and we will be required to stay there for about 30 days.

Since or insurance will not cover this we will need to pay 100% out of pocket and will cost approximately $70,000.00, plus flights to and from London for Jason, Jameson, and myself ( Gracie will be staying with grandma and grandpa in Stanley.),lodging and food for the 30 days we need to be there!

Any help you can offer is deeply appreciated!

We have set up an account for donations at our local bank Town & Country Credit Union, and can accept donations there by deposit at any branch throughout ND, or by Zelle and Venmo as all of these are free and wont charge for any transactions.

Zelle can be found in most banking apps ( it is a bank to bank monetary transaction app), and should have instructions in the app.

Venmo is an independent app used to transfer funds as well. You may need to download it from your app store if you don't already have it.

You can search for us on either app by my Phone number 6053916185

A check can also be mailed if preferred. Please just message, text or call me and i can give you our address.

From our Marfamily hearts to yours we send our sincerest thanks!

Please consider helping if you can.. please share, pray and send good vibes their way.

#jamesonstrong