Reesa Goes to The State Capitol

This week we took Reesa to the Arizona Governor's office to meet with the Health Policy Advisor for Governor Brewer.  We discussed Reesa's story, Krabbe disease and newborn screening. Our goal is to have Krabbe added to the newborn screening panel in the state of Arizona.  Currently 4 states have passed legislation to screen newborn's for Krabbe and 2 states are actively screening.  Arizona currently screens newborns for 28 diseases.  That is the lowest in the nation! As a comparison Indiana, Iowa, Maryland, Michigan, Minnesota, Missouri, New Jersey, New York, North Dakota, South Dakota, Tennessee and D.C. all test for 50 or more diseases.  If you'd like to learn more about newborn screening and how it has saved lives of babies just like Reesa, please visit: Hunter’s Hope - Newborn Screening.

We also took a tour of the Governor's actual office and met some her staff.  It was pretty cool and, of course, everyone loved Baby Reesa!

Reesa Meets New Friends in Pittsburgh

We just got home from our second trip to Pittsburgh to see Reesa's Krabbe specialist, Dr. Maria Escolar.  This was an exciting trip because we met other families dealing with Krabbe including a baby from Maryland who is recovering from transplant surgery as well as a baby all the way from Argentina.  We also had the pleasure of meeting The Aldrian Family from San Diego.  They have twin boys, Tyler and Trevor, who turn 4 years old in November.  Trevor has Krabbe and Tyler is a carrier but unaffected by the disease.  Seeing the two boys was an emotional experience as Tyler is as healthy as can be while his twin battles this disease.  Trevor is a trooper though and an inspiration to families like ours.  He is the oldest child we know of that suffers from the early-infantile form of the disease which is what Reesa has.  The Aldrian's have formed a foundation to help other Krabbe families called Peace, Love & Trevor.  Please visit their website: www.peaceloveandtrevor.com.

As for the doctor's appointment things went fairly well.  As expected, Reesa's disease is progressing but we're doing a good job of keeping her comfortable and as happy as we can.  Reesa had an MRI(her third) because the doctor is a bit worried she may have pressure on her brain caused by fluid build-up.  We should know more in a few days.  Other than that our main focus is managing her meds to keep the spasticity in her arms, legs and hips to a minimum.  The spasms not only cause pain, they also contort Reesa's body and can cause asymmetry and scoliosis.

Thank you all for your continued love and support!

Missouri Now Testing Newborns for Krabbe

AMAZING NEWS!!! Due to the awareness raised and publicity surrounding Baby Reesa's battle with Krabbe disease, the state of Missouri took notice and will start testing every baby for this horrific disease starting next week! The Brady Alan Cunningham Newborn Screening Act had been passed but was not enforced because Missouri lacked the testing capability. They've decided to use New York's testing lab until they have the capability. Thank you to Rebecca Beckham Ruth for getting the law passed and to Skip Schumaker and Cardinal Nation for raising the awareness needed to have the law enforced. Now babies born in Missouri will have the opportunity of treatment that Baby Reesa and Angel Baby Brady never had!

READ ALL ABOUT IT HERE