Rose has Trisomy 18. A chromosonal disorder that has life limiting complications. Trisomy 18 is very controversial in the medical world. Many institutions and professionals do not feel it is "ethical" to treat the medical needs of a person with T 18 because disability is so "severe" .
T 18 is a spectrum, kids are living and are loving members of their families. Families advocate for, care for and and seek interventions. T 18 Children are changing the past prejudice and the families that want interventions are finding them! The Willards are in this group and seek full care for Rose.
Rose is currently having care at Rady Children Hospital in San Diego. Rose has a complicated heart, a double outlet right ventricle, a large VSD, a closing PDA and pulmonary stenosis which has been monitored in the hospital since birth. Meri and Rhett were informed from the start of Rose’s care that her treatment would depend on the hospitals "team" deciding her care. A common ground was found and Rose stabilized so Rady’s agreed to "feed and grow her". Recently Rose’s PDA began to close, the anatomy of her heart is changing. Intervention will need to occur.
Since Meri was 17 weeks pregnant with Rose, she knew that she would need heart care. This is why they chose Rady Children’s Hospital. However, now the team does not see Rose a fit candidate for surgery or heart interventions. The Willards have sought consults and found two hospitals who will treat Rose. They are out of state and will need to travel to the care and remain there till Rose is stable and able to come home.
They are eager to remain as a family. Housing for families is provided. However, the travel expenses are huge for their large family. At this point, this is what they know: there is a hospital that will treat Rose, there is housing and their family can be together.
We are asking for any amount of help to cover traveling costs and support once at the new location. If you choose to help either in prayers or financially, we thank you.
- Jordan Family
- Tyra Baginski
- Joy Woodin
- Matt Jordon
- Adolfo Cruz
Organizer and beneficiary
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