After a long fought battle, we finally have an appointment at UCLA for Febuary 26th!
Because Clover is not responding as well as she should to her current treatment, Clover's rheumatologist at Cook Children's has referred us to a geneticist at UCLA in hopes that he can help us out. Dr Grody is a professor and medical doctor at UCLA who specializes in FMF. He is one of the only doctors in the country who does what he does and knows as much as he does about such a rare disease. The idea and goal of this appointment is for Dr Grody to read Clover's genetic mutation and tell us her exact mutation type. There are varying FMF mutations - some are worse than others, some have specific complications and target specific areas of the body, and others respond better to certain treatment. By telling us which mutation she has, we can better understand what she is more at risk of and which treatment she will respond better to. At this appointment, we expect tests and bloodwork to be performed as well.
As we've previously explained, Clover is on Medicaid. She is unable to be covered by private insurance due to her pre-existing condition. Medicaid does not cross state lines, so her appointment will not be covered by insurance. Therefore, we have to self-pay.
The doctor's visit (consultation), bloodwork and tests, flights, lodging and transportation are included in our goal. If we raise more than our goal, we would love to make this trip less scary for Clover and take her to Disneyland for a day! Big trips, new doctors and repeated tests are very scary for a 4-year-old. She is one tough little girl!
We want to thank all of you for your support! Any dollar amount helps make all of this possible. And as always, if you are unable to provide monetary assistance, we continue to ask for and appreciate your prayers. We can't thank you enough!
- Eileen Guthrie
- Shawn Hull
- Tamy Alvin
- Ali Lynn
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