A Light for Life donations

Financial donations requested by the parents, Sarah and Jon, of Brody Jones.

Early stages of development during pregnancy, it was determined that Brody was going to be born/diagnosed with a rare heart condition/defect called Hypoplastic Left Heart Syndrome (HLHS). HLHS is when the baby does not fully develop the left side of the heart. In Brody's case, he only developed 2.5 out of 4 chambers. A plan was set in motion by the Children's Hospital of Phoenix for his beginning months of life to undergo 3 crucial open-heart surgeries (Norwood, Glenn, and Fontan). The first open-heart surgery (Norwood) was performed when he was only 5 days old (2/11/24) that led him to be hospitalized for 76 days. Brody was able to return home for 78 days before his second open-heart surgery (Glenn) was performed when he was 5 months old (7/10/24). Following the second surgery, Brody has not been able to return home and there have been numerous unpredicted complications: pleural effusions, tracheobronchomalacia, paralyzed diaphragm, damaged trachea, etc. Brody's days consist of him being under light sedation and being on a ventilator. Multiple attempts to remove the ventilator have been unsuccessful. Although Brody has done so well and has made progress being off the ventilator, he continues to have chylous chest tube output. They drain about 90-300ml on the left and 100-700ml on the right daily. The Children's Hospital of Phoenix has done a tremendous job in Brody's care. However, due to the complexity and severity of Brody's never-ending list of complications, they have exhausted their resources. Brody's chest tubes are constantly getting clogged and blocked. Every time a tube has to be replaced, Brody has a hard time breathing because of the fluid buildup. In order to ensure Brody is still on the right path and eligible for his third open-heart surgery (Fontan), we have to get this issue resolved. As of right now, with all the lymphatic complications, he is not an eligible candidate for the third surgery. The Children's Hospital of Philadelphia is the number one children’s hospital specializing in lymphatic disorders. They have agreed to evaluate Brody and offer treatment options that aren’t offered in AZ.

The Children's Hospital of Philadelphia has a medical transport company that will airlift Brody across the states. If Brody does well and is discharged from the hospital, the parents will be responsible for the plane tickets to transfer everyone home. Some room and board is available at the Ronald McDonald House; however, due to the unknown amount of time for Brody's stay, they do have time frames where that is not available. When this is the case, expenses for a longer stay hotel will be necessary as well as a rental car for daily travel.

All donations will go straight to the family for travel expenses and any unused portion will go towards medical equipment that Brody will/may need in his daily life. Thank you to everyone who has taken the time to read about Brody's life and to those who have decided to move forward with their generous donations. Prayers and love sent to the family are appreciated more than you could imagine!