Joaquin was born with Pulmonary Hypertension and had been admitted to the NICU since he was only a day old. After several attempts to comfort him and help treat his condition, Joaquin's doctors sat with me to discuss sending him home. I was told there was nothing more they could do for him, and essentially my options were having him pass in the hospital or at home with me and his siblings. I was completely torn and distraught to have to consider losing him after having a normal pregnancy and 2 healthy children before him.
Eventually I was approached by the hospital's Genetic Testing team (Genomics) who asked if I would be interested in finding a possible explanation of Joaquin's underlying condition. This is when we discovered that he had a genetic lung defect called Alveolar Capillary Dysplasia. It seemed somewhat of a relief to be able to place a name on the true cause of his pulmonary hypertension. However, doctors told me once again that this was a fatal diagnosis and they had no additional options for me.
Thankfully, I'm about as stubborn as they come. I didn't want to take no for an answer. After many sleepless, stress-filled nights, and a heck of a lot of research I found out that even though my son's condition is extremely rare there is a small community of families that was more than willing to help. Meeting them sparked the beginning of Joaquin's journey. I was given a crash course in the world of ACD and even though I was fearful I was given hope.
Now my son will be on the road to Texas Children's Hospital. There he will be evaluated and hopefully placed on the Lung Transplant list. At this point the only known option for survival of ACD is a transplant. The tradeoff is very scary to think about, but I don't want to give up on my son and I want to give him a chance to live the best possible life he can.
I'm asking for help with this because of relocation expenses and medical insurance copays, etc. Please help us get to Texas so that we can give Joaquin a better chance.
Lastly, I wanted to make sure that I thanked a few people who have been by my side during this very difficult time: my family first and foremost (mom/dad, siblings, cousins, extended family), Angelo you've been my rock and my strength/peace, Charlene my star player I appreciate your knowledge and caring heart, Sadio and the entire support team #TeamJoy thank you for sticking by me and offering any help you can, the ACDA for being so quick with responding to me and giving me points of contact that really pushed this journey in the right direction, all of my prayer warriors who keep us in their prayers and hearts, and anyone else that I've possibly forgotten I love you!
- Elizabeth Hedden
- Quamaine Walker
- Mindy Wilson
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