Remi and Scarlett Lehn
Josh and I were blessed with 4 wonderful girls, Remington, Stella, Tatumn and Scarlett. To the normal eye you wouldn’t notice any differences between the 4 of them, but Remi and Scarlett both have a genetic disorder called Osteogenesis Imperfecta “OI”.
Osteogenesis imperfecta (OI) is a genetic disorder in which bones break easily. Sometimes the bones break for no known reason. OI can also cause weak muscles, brittle teeth, a curved spine, and hearing loss. OI is caused by one of several genes that aren’t working properly. When these genes don’t work, it affects how you make collagen, a protein that helps make bones strong.
Josh also has OI. As we grew our family we knew it would be possible to pass on the gene. We started working with Children’s Hospital in Omaha before Remington was born for monitoring. OI can range from mild to severe, and symptoms vary from person to person. A person may have just a few or as many as several hundred fractures in a lifetime. There is no cure, but you can manage symptoms
Remington was born in July of 2008 after a few months we could tell her sclera’s (the white around her eye’s) were still very blue. This is an indicator of OI. At age one she was officially diagnosed with OI. Remi has struggled with muscle strength, loose joints, fatigue due to inflammation and broken bones. To date she has broken 4 fingers and her foot 4 times.
Scarlett was born in January of 2014 the 4th of 4 girls. The 2 middle girls were born without complications and do not have OI. Scarlett was diagnosed immediately when she was born with hip dysplasia. Scarlett also struggles with muscle strength, loose joints, fatigue due to inflammation and broken bones. To date Scarlett has broken her skull and her foot. When Remi and Scarlett are older they will be at risk to pass OI on to their children.
Remi and Scarlett have been blessed to be born so close to Children’s Hospital in Omaha, Ne. They both have been able to participate in the OI Clinic where they monitor their hearing, strength, bones density and overall health. Remi is on infusion treatments to help with bone strength and body fatigue. We’re so thankful for the support of the parish and excited to be honorees for the witness to fitness event to share more information about OI.
Come support Remi and Scarlett at this year’s Witness Through Fitness.
- Children 18 and under may participate in the Walk or Run for free making it a fun summer get together with friends.
- Adults: 5 K Race/ Walk – $15.00 if pre-registered. $20 at the event.
- BBQ Meal – $10.00
- T-Shirt – $10.00
- Donate Online
- Register and Donate Online
- NAM Parishioners can sign up in the back of church
- Contact Julie Crawford at 476-8088 or via email to email@example.com