Starlight Families Share

Holli's Story

My daughter, Holli, simply did not develop.

Doctors hesitated to raise an eyebrow at my trembling baby until she was two years old and still not talking, walking or playing.

Eventually, we were medevaced from Germany (where we lived at the time) to Johns Hopkins Hospital in Baltimore, where my family spent an entire summer watching Holli undergo medical testing. Finally, we learned she had mitochondrial disease.

Holli’s diagnosis completely changed us — she became the sole focus in our lives. Suddenly, everything revolved around her medication schedule, therapy schedule, hospitalizations, etc., and it continues to this day. READ MORE 

Shelby’s Story 

When Shelby was just 10 days old — still too young to come home from the hospital — doctors discovered a small hole in the upper chambers of her heart and diagnosed her with congenital heart disease.

Within a year, she underwent an ASD/Partial VSD repair to correct the problem. Little did we know at the time that it was only the first of many health challenges that Shelby and our family would face. I had always thought, “this could never happen to us,” but since that time, our lives have changed completely. READ MORE 

Tyler's Story

Because Tyler was our first child, we didn’t exactly know what was normal and abnormal. At 6 months old, he kept having repeated head, arm and body spasms. When these spasms started to increase daily, we began taking him to different doctors until we finally found one that was familiar with what he called “infantile spasms”— and Tyler was diagnosed with Tuberous Sclerosis Complex (TSC).

We were devastated. READ MORE 

Erikah's Story

Our daughter Erikah has been in and out of the hospital as long as we can remember. We thought things would get a lot easier after she recieved her liver transplant. However, after countless labs, clinic appointments, and hospital admissions due to a suppressed immune system, we have come to realize that the surgery was only the beginning of a lifetime of specialized care. For this reason, finding the time and funds to enjoy ourselves out as a family would be all but impossible without the Starlight Children's Foundation. Thanks to Great Escapes, our beautiful daughter and 2 rambunctious sons have enjoyed hockey games, parties, plays, and so many other wonderful experiences without my husband and I having to worry about planning it all and where the money will come from. 

Matthew's Moments

Starlight,
So bright,
Makes me feel special
Again tonight.

They take their time
To plan fun things,
Then treat my parents
Like Kings and Queens.

Whatever they plan,
Whatever we do,
It includes my whole family
To be there too. 
      Read the rest of Matthew's poem   

Jackie's Story

Jackie underwent surgery to remove the tumor right away, and a biopsy confirmed it was cancer. She was diagnosed with medulloblastoma, which would require six weeks of radiation and a year of chemotherapy every week... Read on