Last week my family received the most devastating news anyone could ever hear. My nephew Devin, age 6, was diagnosed with an inoperable brain tumor and was given a life expectancy of 8 months to 2 years.
Doctors have explained that the tumor, known as Diffuse Intrinsic Pontine Glioma (DIPG), is a very rare and aggressive form of cancer typically found in children ages 5-9. Only 200-300 children in the United States each year are diagnosed with DIPG as they struggle to find a cure. This type of tumor is located at the base of the brain and the top of the spine. Over time, it will impact all of little Devin's essential bodily functions: heartbeat, breathing, swallowing, eyesight and balance.
As I'm sure you can imagine my brother James, sister in law Christine and our families are deeply shattered by this news. James and Christine met one of the first days of freshman year in college and have been together ever since. Their dream of having a big family came true with 4 beautiful boys, all 12 and under; Colin, Owen, Brenden and Devin. Their lives are devoted to these kids and the family.
Doctors at Boston Children’s Hospital have informed us that radiation treatments are the best we can do to keep Devin comfortable for his remaining time. As we struggle to pick our heads up and grasp what we are being told we just simply cannot allow this to happen without a fight. We have been calling doctors, sending scans and turning to clinical trials to see if any breakthrough treatments exist.
With all of these efforts comes a financial burden that no family should have to worry about while desperately trying to save the life of their child.
Devin is the youngest of James and Christine’s boys and the youngest of 8 cousins, but you wouldn’t know it! Devin has spunk and a fun personality. He likes to dance and make funny faces. In fact, it’s hard to find one picture where he isn’t making silly faces. He wants to be noticed and will make himself known. Some of my favorite times with him are from reading him books and answering the questions that followed. He loves his grandparents and being with the family.
This past Christmas the cousins were all playing heads up and he was right in there doing his best. He is not afraid to speak up and holds his own with his big brothers. He will jump on you, wrestle you, and hug you when you least expect it. The brothers enjoy each other and spend the majority of their time together and supporting each other on the sidelines of their sporting events.
His cousins adore him too. Each year we all vacation together and the cousins spend their days swimming, hiking and their nights playing hide and seek, board games, watching movies and roasting marshmallows. Not having Devin there is a thought we just can't bear to think about.
Losing Devin would have a profound effect, not only on his older brothers, but also on his cousins who will each be left with the plaguing question WHY???? This is so difficult for us as adults how can all these kids come to terms with this.
Please help James and Christine and please pray for my family and help us in any way that you can. All donations are appreciated and will help us do whatever needs to be done to give Devin a fighting chance in the limited time we have.
Thank you from the bottom of my heart.