Starlight Families Share

Brett's Story

When Brett was born, the pediatrician heard a heart murmur. He was sent to a cardiologist who diagnosed him with Tetrology of Fallot, a heart defect that causes low oxygen levels in the blood, which can lead to bluish-purple coloration of the skin (cyanosis).

We were blessed because Brett was actually born a “pink tet” baby and looked perfectly normal. If it had not been for the doctor’s diagnosis, we would have never known Brett’s condition until his symptoms showed later in life.

At first, all I could think was that Brett was not “normal.” He was labeled a “heart kid,” a child who is not perfect. At three months, he had open heart surgery and has had additional surgeries for his pacemakers. READ MORE 

Phillip and Lillian's Story

My husband Greg and I have 5 children: Phillip and Lillian, 7, Amelia, 5, Ruth, 2, and Joshua 4 months.

Phillip and Lillian were born prematurely at 25 weeks. We knew then that we would have many hurdles to face. Lillian has had many complications that started almost immediately. Most of Lillian’s diagnoses were in her first year, and she was consequently in the hospital several times that year. Just this last year she had a tracheostomy. Most of Phillip’s diagnoses have occurred since he was 4.

Our life completely changed due to the twins’ various illnesses. Our life became full of doctors’ appointments and visits with therapists. Vacation time for my husband was used up with hospital stays and doctor visits. Our debt also increased. Since Lillian got her trach, our life has changed even more drastically. She now has nursing care at home, and traveling has become very difficult. READ MORE

Tiffani's Story

Being a teenager in high school is never easy, but just think… if you had an illness or disability it might be even harder right? As a 17-year-old, high school senior living with muscular dystrophy, I can tell you that sometimes it is, but you can always change that. One thing that helps me so much in my life is an online social network for seriously ill teens called Starbright World, run by Starlight Children’s Foundation. It’s kind of like MySpace or Facebook -- except the only members are teens who have a serious illness and their brothers and sisters. 

I sign on almost everyday to talk to all of my friends from all around the world. We all have different conditions, but everyone understands what its like to be sick and they don't make me feel bad for being sick.

My best friend on Starbright World is Matthew. He is one of the strongest, most spirited people I have ever met. We have the closest friendship, even though he lives in Seattle and I live in Griffin, Georgia.

The weird thing is, under any other circumstances, it would be way different. If we went to the same school we probably would have never spoken because you never really have time to stop and talk at school. Starbright World connects you to people who understand and really care about you. On Starbright World you know that you can trust your friends because they know what you are going through.