Sunnie was diagnosed on 10.26.2022 with DIPG- a tumor that develops in the brain stem- typically in children. The brain stem -specifically the pons- is what controls all of our motor function, as well as life functions such as swallowing, and breathing. DIPG is considered terminal, and currently has no approved treatment. Most children diagnosed with this disease are given 9-18 months to live. They consider this a "rare" pediatric cancer, but I can tell you from first hand experience this is NOT rare.- In fact, I have talked with 10 moms that have children currently fighting or battled DIPG in the state of NC alone! I attended a DIPG Mother's retreat- where I met with 60 other women who had children with DIPG. Only 5 of us had children currently alive and battling! 12 months after that event- none of those 5 children are still living. There are thousands of children all over the world that are currently battling or have passed from this tumor. Sunnie was a healthy child- and I do not mean healthy like "by the book" healthy. She was a HEALTHY child. She barely ever had an ear infection her entire 10 years. She walked at 9 months, had full conversations at 1.5 years old. She's always excelled in school, especially reading. She's been physically active her whole childhood- from playing soccer, softball, basketball, and of course dancing! So when we were told she had a terminal tumor and only had 12 months to live- SHOCK doesn't even to begin to describe our reaction. SHE HAS HER WHOLE LIFE AHEAD OF HER! 

 

Sunnie endured 42 rounds of radiation to the brain stem, 12 rounds of chemotherapy, and 8 rounds of Avastin during her 17 month battle. She lost the use of her right hand and had issues walking after her first 30 rounds of radiation. By December of 2023 Sunnie had completely lost the ability to walk, and began to have issues with her speech. Ultimately- Sunnie lost her earthly battle with DIPG and passed away on March 25th 2024. With her she took an insurmountable amount of love and hope from our community. 

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During our 17th month battle with were blessed with a great deal of support from our local community, as well as various foundations that helped make our day to day life the best we could possibly make it (outside of being cured.) We truly felt that while we were dealt the worst possible card- we made the most of the time we had because of community we had around us. What we have discovered is that there is huge lack of support once a child has passed. Loosing a child is the absolute worst, life altering experience any family can experience. Losing a child because of pediatric cancer is even worse. We as parents are forced to watch our children suffer and decline- and are unable to do anything about it. While all parts of this journey are extremely hard- we feel as though the journey after the loss of a child is a different kind of hard. There is no monetary support from the government for parents to take time off of work to grieve, bills and financial obligations do not stop, and it feels as though the world just keeps moving forward, when our world has completely stopped. Mental Health services are not always covered by insurance and are often expensive and not convenient for families to attend. 

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Our mission here at SunnieStrong is to raise monetary funds to help families navigate the "after" journey. We want to provide financial assistance to families so that they are able to take time off of work to properly grieve and find their new "normal". Apart of our goal is to make seeking grief counseling and mental health services an easy and affordable process for affected families. 

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