Valerie's Story

Photos courtesy of Light and Vision Photography

Meet Valerie. This Tiny Light loves playing Polly-Pockets and Barbie with friends. She will be 8 in June and has already passed multiple swimming levels! She loves crafts and movies. Valerie has a very loving demeanor. She is positive and is filled with patience. Valerie is a very happy 7 (almost 8!) year old.

Valerie was diagnosed with VonWillebrand disease at six months old after being cut between her finger and thumb. Her mom was worried after the cut took a long time to stop bleeding. She was particularly concerned because she herself was diagnosed herself with this severe bleeding disorder at the age of 19.

VonWillebrand is an inherited disease, so the diagnosis wasn’t a shock. Her parents has suspected that she had inherited the disease, so after the confirmation they moved on and made a vow that they would be the best advocates for their daughter that they could be.  Valerie has suffered through endless blood tests and needles. Thanks to the guidance of some amazing pediatric nurses, discovering innovative ways of giving needles has been a blessing.

Valerie’s mom has turned this unfortunate circumstance into a bonding opportunity between herself and her daughter. “I encourage her with love and praise, and by telling her how ‘special’ we are.” While there will forever be a fear of Valerie being hurt and them not being there, her parents will continue to inform people about her disorder. Research has come a long way since Valerie’s mom’s disorder was first diagnosed, and she will be taught as she matures how to deal with menstruation, anemia, etc.  Valerie wishes to be a teacher when she grows up. And her parents are confident that she will be!