Support Eva's Fight Against Rare Genetic Disorder

Hi. I’m Leslie. I’m sure most have seen my fb post begging for prayers for my daughters best friend who is only 16. I am friends with her parents as well. She has been recently diagnosed with an aortic aneurysm that needs repair immediately and an ultra rare genetic condition called ACTA2-R179. It causes a condition called Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS). Only 60 kids in the entire world have this condition. Eva is now the 61st. It causes deteriorating of all the Smooth muscles, especially the cardiovascular system. Time works against you with this condition. There is no know treatment for this. However.....There is a doctor in Boston who is developing a gene treatment for Eva's condition. Her gene therapy is only in animal trials right now, and not approved by the FDA.

Eva will have the aneurysm repair surgery done in a Boston MA hospital then will see this dr to begin the experimental drug. A Texas dr reached out to the family and may also be able to help.

I am asking for anyone to help this family monetarily and spiritually as they take time off work to be with their child in MA for the surgery, recovery and then travel expenses back and forth to Boston to receive treatments. It will be a very long road for Eva who is the sweetest gal you will meet. Most beautiful inside and out. I know we are known as “the valley with a heart”. If you can’t donate, please share. I promise to give updates with her surgery and progress with treatments.

#EVASTRONG#

here is an update :

Good news for Eva. Her brain and neck scans at CHOP showed her blood vessels are in great condition! This alone is very miraculous. She needed this clearance to move forward with her Aorta repair surgery in Boston. CHOP has been wonderful, and they are working very closely with the Boston team in sharing Eva's medical records and helping anyway they can. The cardiac team at CHOP knows Eva's surgery will be complex and that it is beyond time to get this fixed. Boston needs to gather 19 specialists for this surgery, and arranging all their schedules is alot of work, as some of them are out of the country right now and have to be brought back to Boston. Please pray all the scheduling comes into harmony. The Cardiac surgeon from Boston already reached out to me, he's a brilliant young doctor who also teaches surgery at Harvard School of Medicine. He is skilled in this specific surgery. Please also pray for God to bless him as well, his name Dr. Jordan Bloom.

Thank you so much to everyone for your love, support and prayers ❤️

We will be heading to Boston as soon as we get the word, for pre surgical meetings. Again please also pray for supernatural strength for Eva's Aorta, to stay super strong as we wait for the surgery. I would go even further in your faith, and ask The Lord to shrink that aneurysm. 'With men it is impossible. But with God, all things are possible.' -Jesus