Half A Heart Twice The Fight- Greg's Story

Hello my name is Koli I am Gregory (Greg) mom.

I want you to get to know Greg like I do first. He is a 14 year old boy that loves to watch anime and You Tube. His favorite show is Demon Slayer and loves the colors red and black. He has an older sister Kailyne that is his best friend. He likes to cook with one day maybe becoming a chef, play the drums, bowl, and do archery. Greg likes to crack jokes and keep everyone on their toes. He is passionate and probably one of the strongest,bravest young man i know. Even with all that he has going on he still manages keep his head up and he is my hero and I admire and am inspired by him.

Greg was born with Hypoplastic left heart syndrome. This is a severe heart condition where the left side of the heart is severely underdeveloped. Hlhs as it's more commonly known required him to have 3 open heart surgeries before his 3rd birthday. In 2014 Greg began going into heart failure, his care was then switched from Medical City of Dallas to Children's Hospital of Dallas. They have been doing a wonderful job at managing his heart.

On November 4th 2021 Greg heart conditioned worsened even more and on November 10th he had an LVAD placed since he is an single ventricle its referred to as SVAD. Since then Greg continues to see a lot of specialist as he has had issues with Liver,kidney,GI, psychology, physical therapist, occupational therapist, autism center, therapist, Dietician, Infectious Disease etc. This is where our family could really use your help. Each specialist has a separate copay, Each clinic visit that they end up doing an Echo, Ekg, labs etc costs thousands after insurance. His home health supplies for dressing changes, the multiple meds he takes daily, transportation to Dallas multiple times a week has really been adding up. After insurance pays their part we are left still with high medical bills and seem like we just can't get ahead. My husband and I try our best.

The road ahead of him is constantly changing he is on destination therapy as he is not transplant eligible due to high antibodies and O+ blood type his wait would be even longer. On May 18th 2022 he had an aortic cath procedure to help with his aortic valve not opening and closing and his tricuspid valve that leaks as well. A cribriform occluder was placed in his valve to completely block it off so now he is 100% dependent on his SVAD. While in the cath they learned his pulmonary veins werent carrying blood to his lungs and the amount that did was getting trapped inside because he wasnt getting adequate flow to push the excess fluid out. His lungs were functioning at 60 and 40 percent at moment. The only way to do this is to give him tons of diuretics to flush his body all while his kidneys try and recover to make the urine he needs. He was in hospital almost 4 months and home as of 9/1/22 but still goes for frequent labs and clinic visits . Admitted again on 12/7/22 with joint swelling and kidney issues praying for a short stay. Which ever way his road takes him. I will always be by his side and advocate for him to give him the best chance at life and best route to recovery. We are blessed with a great support system of family and friends. If all you can do is pray then we kindly take your prayers. We definitely believe in the power of prayer and encouragement and we speak healing into Greg for we know he is in God's hands.

This is the only Gofundme for Greg any other is a scam