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!
Sunday, August 11, 2013
Thursday, August 1, 2013
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:
Sunday, July 7, 2013
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 30th. 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.
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