Race for Every Child 2024

Emmylou's Unbreakable Spirit

Emmylou was born with two genetic disorders Osteogenesis imperfecta (OI) and Hypophosphatasia (HPP).

Osteogenesis imperfecta (OI) is a genetic or inheritable disease in which bones fracture (break) easily, often with no obvious cause or minimal injury. OI is also known as brittle bone disease, and the symptoms can range from mild with only a few fractures to severe with many medical complications.

Hypophosphatasia (HPP) is a genetic condition that causes abnormal development of the bones and teeth. The severity of HPP can vary widely, from fetal death to fractures that don't begin until adulthood. Signs and symptoms may include poor feeding and respiratory problems in infancy; short stature; weak and soft bones; short limbs; other skeletal abnormalities; and hypercalcemia. Complications can be serious. The mildest form of the condition, called odontoHypophosphatasia, only affects the teeth. HPP is caused by genetic changes in the ALPL gene. Perinatal (onset before birth) and infantile HPP are inherited in an autosomal recessive manner. The milder forms, especially adult forms and odontoHypophosphatasia, may be inherited in an autosomal recessive or autosomal dominant manner.

Emmylou was born with several of her ribs broken and her right arm broken. About 2 weeks after we brought her home, we were giving her a bath and we broke her right femur. She started receiving bone infusion treatments at about 6 months old. Luckily since breaking her right femur she has not broken any more bones. Both of these genetic disorders Emmylou has to live with the rest of her life. Emmylou would not be able to be where she is at today without the care of Children's National Hospital.

Thanks to Dr. Laura L. Tosi and her team at Children's National for all the hard work and dedication to helping kids and adults with OI live fulfilling lives.

We cannot thank Dr. Tosi enough for the care and compassion she and her team has provided to Emmylou and us throughout this process.

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Emmylou's Unbreakable Spirit

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