Day In the Life: Reesa

Day In Life of Reesa - We're often asked what a typical day is like for Reesa. We had this video made to show what Reesa is up to and to give hope to families of newly diagnosed children. It's a happy video! 

CLICK BELOW

Reesa's Biggest Fan

Yesterday Reesa lost her biggest fan in the world...her Popi went to heaven.  Popi (Mike Stutzman) loved his grandchildren, Reesa and Rocco, so much and they brought an infinite amount of joy to his life.  We're going to miss him so so much but we know he is watching over all of us for the rest of our lives.  Mike "Popi" Stutzman 1949-2015

Happy Third Birthday Reesa!

Reesa Enjoying Music Therapy & Physical Therapy

Happy Easter 2014!

Easter 2014 - Grayhawk Golf Club - Scottsdale, AZ

Reesa Testifies In Front of the Arizona Senate

This week we testified in front of the Arizona Senate Health and Human Services Committee in an effort to get them to pass HB 2491, which would add Krabbe Disease to the newborn screening panel.  We also had the opportunity to meet the Gerlitz family who recently lost their daughter, Parker, to Krabbe.  It was an emotional day but also a postive step towards our goal of having every child born in Arizona tested for this disease.  Treatment options for Krabbe disease are available but early detection is crucial in order to give these children an improved quality of life.  HB 2491 would help insure a timely diagnosis to give every Arizona child the chance at a healthy life and prevent their families from experiencing hopeless heartbreak.

CLICK BELOW TO VIEW OUR TESTIMONY:

Reesa on the Front Page of the Arizona Republic

Reesa was on the cover of this Sunday's Arizona Republic newspaper. The story was about our effort to have Krabbe disease added to the mandatory newborn screening panel in Arizona. If Krabbe disease is caught prior to the onset of symptoms then there is treatment available via bone marrow transplant. We have personally met children who have had this treatment done and they are walking, talking, healthy children! You can read the story and view the video by clicking HERE.

2013 Baby Reesa Foundation Golf Tournament

Thank you to all of the generous sponsors, golfers, attendees and BRF Board Members for helping to make the 2013 Baby Reesa Golf Tournament a HUGE Success!!!

Reesa with Mom and Dad on the News!!

Foundation Helps Children Suffering from Rare Degenerative Disease

Please Click Here and LIKE Our New Facebook Page

Reesa Loves Music Therapy

Happy Second Birthday Reesa!

Reesa had a wonderful second birthday!  To celebrate, we had family over for a BBQ.  We wanted to share a video of the birthday girl on that special day!

2013 Hunter’s Hope Symposium

Our family just returned from the Hunter's Hope Family and Medical Symposium held at the Holiday Valley Resort in Ellicottville, NY. Hunter’s Hope Foundation was established in 1997 by Jim Kelly (NFL Hall of Fame) and his wife Jill, after their infant son, Hunter (2/14/97—8/5/05) was diagnosed with Krabbe Leukodystrophy.

The annual Family & Medical Symposium brings together scientists, doctors, families, strategic partners, staff, board members and volunteers for a week of sharing information, learning, and supporting one another. Prominent researchers and families affected by Krabbe and other Leukodystrophies from around the world attend the Symposium to gain in-depth information about Leukodystrophies, learn about the latest developments in scientific research and medical care, identify available resources, and develop support systems.

This was our first time attending the event and it was a wonderful experience. We got the chance to meet, and learn from, other families from all over the world who are in the same situation as us. It was also a great opportunity for just the three of us to get away and spend some quality time together.  The venue was breathtakingly beautiful, the weather was perfect and Reesa was comfortable and relaxed the whole trip (including the plane rides).  It was also an emotional and inspirational experience as we learned the stories of families who've lost their children and those who've been dealing with these diseases for many years.  We learned how lucky we are to have the Hunter's Hope network as a resource.  We met families who lost children to this disease decades ago, when there was no such support system.  It is amazing how motivated and dedicated the Universal Newborn Screening advocates are and the progress they're making in many states.  We listened to researchers from the Hunter James Kelly Research Institute discuss the progress they're making towards learning about and curing diseases that affect the Myelin in the brain, like Krabbe disease.

Best of all, we met some really cool people and Reesa met some friends that are just like her...perfect! 

Here are some pictures from the trip:

Hunter's Hope Symposium VIEW SLIDE SHOW DOWNLOAD ALL

Summertime in Arizona!

It has been a couple months since our last update on Baby Reesa. For the most part, Reesa has been well and her condition has remained stable. Over the last year we’ve come to realize that the progression of Krabbe Disease is unpredictable. Although we’re always battling Reesa’s spasms and nerve pain, she’ll go weeks where her discomfort is present but manageable. Then, seemingly out of nowhere, Reesa will have days of horrible pain, spasms, muscle twitches, fevers and high heart rates. Krabbe Disease is degrading the insulation around Reesa’s nerves and inhibits the signals between her brain and the rest of her nervous system. Reesa takes over a dozen medications per day for nerve pain, inflammation, spasticity, comfort, digestion, bone strength, etc. but there are times when all we can do is cuddle and love her until the pain goes away. She is such a strong little girl who inspires everyone that meets her.

Reesa turns TWO on July 30^th. She is such a big girl, 25 lbs, chunky and cute as ever. Reesa is surrounded by LOVE every day of her life. Her parents, grandparents and great grandparents can’t get enough of her! A couple weeks ago Reesa had family come all the way from Chicago to meet her. She loved spending with Uncle Glen, Aunt Laurie and Cousin Amy and we know they loved spending time with her.

Reesa absolutely loves spending time swimming in the pool and it’s a good thing because there isn’t much else to do when it’s 110 degrees outside!

Here are some recent pictures of Reesa enjoying the summer.

		Summertime! VIEW SLIDE SHOW DOWNLOAD ALL

Bye Bye Cast!

Today Reesa’s cast was removed!  The doctor took a follow up x-ray and said her femur has heeled up nicely.  Reesa didn’t make a peep while the nurse cut the cast off.  She is such a brave little angel

Another Trip to Pittsburgh to visit Dr. E

We just returned home from our third trip to visit Reesa's Krabbe specialist, Dr. Maria Escolar at the NDRD at Children's Hospital of Pittsburgh.  Reesa is part of Dr. Escolar's study to track the progression of Krabbe disease in order to help future children affected with the disease.  Dr. Escolar and her team were generally pleased with Reesa's health considering her age and length of time since she was diagnosed.  Although Reesa vision has greatly diminished she is still able to detect bright, abstract colors.  Reesa's hearing is very good.  She also had a bone density test and will be put on special supplements to help prevent future fractures.  They also preformed an MRI to track the demyelination process in her brain.  We won't know the results for a couple weeks but Dr. Escolar was optimistic that things weren't progressing as rapid as some affected children her age.  The most important thing is to avoid respiratory issues and to keep Reesa's lungs healthy.  So far so good!

Reesa was a perfect little girl the whole trip.  She did great on both plane flights and during all of examinations.  They were having issues with the MRI machine so Reesa had to sit still in the machine for almost 2 hours with no anesthesia.  She was perfect girl and didn’t mind sitting around at all!

As usual Dr. Escolar and her team were very knowledgeable and helpful in answering all of our questions.  We finally met one of Dr. E's nurses Tara West (in-person) which we were really looking forward to.  Tara has been an invaluable resource to our family over the last year.  She is available day or night and has helped us during many urgent situations.  We are unbelievably lucky and grateful to have her as part of Reesa's medical team.

Some other good news; Reesa's leg is healing nicely and she will have her cast removed this week!

Here are some pictures from our trip to Pittsburgh:

		Pittsburgh Trip - April 18, 2013 VIEW SLIDE SHOW DOWNLOAD ALL

Ouch!...Reesa's Leg!

It has been a while since our last update and for the most part things have been going very well.  We've been taking Reesa out quite a bit lately to enjoy the amazing weather before its gets too hot.  On the weekends, Reesa loves sitting on restaurant patios while Mom and Dad have lunch.  We also had beautiful Easter brunch with Grandpa Jim, Houston and Kelsey.

Unfortunately this past Monday we had a little setback.  Reesa had a bad spasm while strapped in her stander and she broke her femur just above the knee.

 
We had a hectic afternoon, evening and night at Phoenix Children's Hospital and the next day Reesa had her leg set and put in a cast.  The doctor said she'll have the cast on for 4 weeks.

Since Reesa doesn't stand or walk her bones lack the density caused by weight bearing and gravity. She is going to do a bone density test when she sees Dr. Escolar in Pittsburgh in a couple weeks. Reesa has been strong, as always, and she's back home in good spirits.