Support Jackson's Road to Recovery and Family

UPDATE!!! Jack is doing so well! He is getting bigger, stronger and smarter everyday! We go to the cardiologist this week to see what is going on with his heart. Of course it is always just one thing after another though. Like I stated previously that I have had issues with my back for a long time now. Just about when I decided I was ready to go back to work my back got so much worse to the point where I was unable to walk or function most days. I ended up needing emergency back surgery about a week ago because the discs were pressing on nerves that affected me to be able to use the bathroom. I was in the hospital for a few days but now I am home. Unfortunately it will be a little while until I am able to go back to work because I need to fully recover since my job ( as a hairdresser) is very tolling on my body. We can't thank everyone enough for all the support we have already received. Our circumstances right now are not great and I know they will one day get better. In the meantime we could use a little more help getting back and staying on our feet. Nick of course had to take time off of work during my surgery.  On top of that all , Jack still requires going to 3 therapies a week on top of doctors appointments. Absolutely anything helps we are so greatful

Hi , my name is Connie Kelly.. and as difficult as this is ...I want to ask that you please consider reading about my families story. My son Jackson is 11 months old and was born with Down syndrome and multiple heart defects. I found out I was pregnant in May of 2023 and not to long after I found out that my son had a 95% chance of having Down syndrome. I was filled with all types of emotions and fears. Shortly after that I found out that my son was also going to be born with a few congenital heart defects that would require surgery a few months after he was born. I didn't care that my son was going to be born with Down syndrome. I already loved him so much no matter what but I was so terrified for my babies life.

My entire pregnancy was so so difficult. Besides everything with my baby .. I have struggled with issues with my back for years. I have herniated discs and pinched nerves. The more pregnant I got the harder it became for me to work because I pretty much couldn't even walk. Between my back , a high risk pregnancy , and multiple hospitalizations due to high blood pressure I had to stop working. I have not been able to go back to work since because of everything going on with Jack.

Jack was born at 37 weeks and 2 days after going to the doctor for a routine ultrasound and seeing his amniotic fluid was very low. I was sent to the hospital and induced where I was in labor for 30 hours before needing a c section. After Jack was born I got to see him for 10 minutes before they sent him to another hospital while I had to stay where I was. I didn't get to see my baby for 4 days. He was sent to NYU because of his heart because they thought they were going to need to do immediate surgery. Jack stayed at nyu for 3 weeks and then was transferred back to St. Joes for a week. While at nyu we found out they did not take our insurance and we were billed 130,000$. Nick took family leave from his job to be able to be around as much as possible knowing everything with jacks heart. While he was on family leave his job laid him off. I'm sure you can imagine the emotional and financial stress that put on us in our already extremely difficult situation.

As many of you may already know ... my sister so kindly made a go fund me for us prior to his surgery that raised an amazing amount of money for us in our time of need. We have used that money for rent, bills , medical needs and bills not covered under insurance , transportation back and fourth to hospitals, food, supplementing income, etc. Nick has been out of work alot with everything with jacks health so besides only having one income in our household it hasn't been consistent. Now we are in a very tough position.

Jackson was born with atrioventricular canal defect , and coarcatation of the aorta. He had multiple holes in heart and instead of 2 valves he had one. Jacks surgery was scheduled for may 20th and before his surgery he was hospitalized in the city a couple weeks prior for a few days because he was in heart failure. Then he was in the hospital for a week with his surgery. The Surgery went well but the valve that was created is narrow and he still has some moderate leakage. Then a couple weeks after his surgery he was then hospitalized again for fluid buildup around his lungs. He is being closely monitored by our cardiologist. With jacks health still up in the air , I am unable to go back to work just yet. Jack has 3 therapies a week and we spend so much of our time at doctors.

Jack was on a special high calorie formula that he needed to gain weight before and after surgery that was costing us 100$ every few days. His ng supplies besides what's covered by insurance are also very pricey. I have a career that I can't wait to get back to when the time is right but right now the most important thing is my baby's health.

My family could really use all the support we could get right now. This is not an easy thing to do but we have a long journey ahead of us filled with so much uncertainty. We could use a little extra help getting back on our feet while we continue to go through this very difficult time without worrying about how we are going to survive. I cannot thank everyone enough for all the donations, support and love we already received. Anything and everything helps at this point so that we can continue to prioritize jacks health. Jackson is the most wonderful human as most people know and can see. He deserves nothing but the best. PLEASE SHARE and continue to pray for our little guy

Update: Jack is doing well! He is getting bigger, stronger and smarter everyday! Of course it is always just one thing after another though. Like I stated previously that I have had issues with my back for a long time now. Just about when I decided I was ready to go back to work my back got so much worse to the point where I was unable to walk or function most days. I would up needing emergency back surgery about a week ago because the discs were pressing on nerves that affected me to be able to use the bathroom.  I was in the hospital for a few days but now I am home. Unfortunately it will be a little while until I am able to go back to work because I need to fully recover since my job ( hairdresser) is very tolling on my body. We can't thank everyone enough for all the support we have already received. Our circumstances right now are not great and I know they will one day get better. In the meantime we could use a little more help getting back and staying on our feet. On top of that all , Jack still requires going to 3 therapies a week on top of doctors appointments so I have to be there for all of that. Absolutely anything helps we are so greatful