Malikia was a preemie when she was born. She cried all of the time, but the doctors repeatedly told me I just had a collicky baby on my hands.
News of her illness came to us when she was four months old.
As I was breast feeding her one day, Malikia bursted out with a horrible scream. It was a scream I had never heard before, a scream I certainly had never heard coming from any of my other three daughters.
That same day, I took Malikia to Minneapolis Children's Hospital. The emergency room doctor looked into her eyes and told me, “I believe your daughter has a rare bone disorder.” She was diagnosed with Osteogenesis Imperfecta, a condition that causes extremely fragile bones. We were sent to Gillette Children’s Specialty Healthcare in St. Paul, MN. X-rays showed that Malikia had multiple fractures that were at different stages of healing. The scream she had let out days before while I was breastfeeding her was because of a spiral fracture she received to her main leg bone.
I was in shock for a long time. Scared. Overwhelmed. Malikia’s father left our family because the situation became too much for him to handle. As a result, I had to quit my job to care for my daughter. I also lost many family members and friends because they were afraid to be around Malikia — she was so little that everyone was afraid to hold her. I had the same fear — the fear of breaking her, so I would hold her with a pillow.
We’ve led a very secluded life all of these years. No going out to stores or parks. It’s very draining and depressing, especially because Malikia is nine years old and wants to do so many things, but can’t because of the risk of fracturing herself.
We first learned about Starlight during one of our visits to the clinic. I read a brochure and signed us up for Starlight’s Great Escapes family activitiesprogram. Since then, Malikia and I have been to a Minnesota Twins baseball game, to Sever's Corn Maze and holiday parties. We’ve even gone swimming and bowling!
Starlight has certainly given us so much. My family cannot afford outside entertainment, but at your Great Escapes events, we are finally able spend quality time together. You give us days with no worries — and I can’t thank you enough.
- Kimberly, Starlight Mother