REMEMBERING DECLAN
A NOTE FROM DANIELLE, DECLAN'S MOTHER:
A lot of people from far and wide have heard of Declan’s story. If you don’t know of Declan then here’s the shortest summary I can give you on our Bubba.
Declan was born facing an uphill battle from congenital heart disease. Though it was a roller coaster in the beginning he showed us he was a fighter. Throughout multiple hospital admissions between UVM and BCH he was widely known for his wild hair and big blue eyes. When I couldn’t be there with him I would call to check on him throughout the day and more often than not he wouldn’t be in his room. He would be with nurses or even the doctors while they took him visiting through the halls. He was a popular little guy with his big smile. He would just chatter to anyone who would listen. Although if you played Elmo or Moana he would get so focused he would forget you were in the room with him.
We will never have the answers for what exactly happened, but in February of 2023 Declan went into cardiac arrest which caused a multitude of injuries. He fought for 10 long weeks before he had told us that it was time.
Declan passed away peacefully outside on the hospitals rooftop on April 14, 2023 at just 9 months and 7 days.
During that time we faced many battles with housing in Boston, getting our other 2 kids to school in Vermont, my husband trying to work so we didn’t lose our only income, the girls getting repeatedly sick, financially struggling due to paying our regular bills and then the added expenses of me living in Boston while Declan was in the hospital for 2 1/2 months.
With the help of programs like Paul Magnus Foundation we were able to get some help towards our mortgage so it was one less thing to worry about. If you’ve ever had a loved one in the hospital you know how stressed you already are without adding financial worry to it. Not only did this foundation help us financially but we felt we had a personal connection to them.
You see, the world works in mysterious ways. Over the winter of 2022 Declan was in the CICU. I remembered being in his room and people watching with him. There was this family I would see daily with their little boy who was in a little car rolling through the hallways while his parents had a newborn baby girl that the nurses would just fawn over. We would often see the parents throughout the hospital but when you’re in survival mode you tend to have your blinders on and don’t really reach out to people. Fast forward to February when a wonderful nurse of Declan’s told us about Paulie and how his parents have started a foundation in his honor.
As I looked into the foundation and heard about this wonderful little boy, I realized this was the same little boy I would see rolling along in his little car while his parents followed with their newborn. I was devastated to hear that Paulie had passed away. You may not know these other children and families but you’re still rooting for them just as much as you are your own child.
After Declan passed away another CICU family told me about how this woman hosts a support group once a month just for other parents of BCH CICU baby/kids that have passed away. During that first meeting I realized this was the mom of Paul. His mom Stephanie is the one who selflessly runs a foundation in Paul’s honor and runs a support group for other parents who’ve been through the same tragedies. This family has been through such heartache but yet they still step up and keep pushing forward to make Paul proud. They are doing amazing things with this foundation and many heart families are able to be supported during some of the hardest times of their lives because of them.
If you would like to donate to this wonderful foundation, I know so many heart families would be grateful for the help. ❤️
To donate in honor of Declan, please visit:
