Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Saturday, September 1, 2012

A VERY Special Gift!

Tomorrow is the big day! The charity ride benefitting Case McNulty (YAY) and Tiffanie Even's is TOMORROW! I am SO excited. I have met and grown to love an INCREDIBLE group of people. Through out the year the Burgi's low Life Riders work tirelessly to put together and raise money for a 100 mile motorcycle ride ending in a great big PARTY. They say (and I quote) :it's for the kids." Kids they never met. Kids they know have many needs, health wise and finically. Kids that get pocked, cut open, stay in hospitals and are sick. They really "do it for the kids" and it shows. Some of the kindest, most generous people I've ever met ride motorcycles and we are blessed beyond words to know them! THANK YOU LOW LIFE RIDERS and all who volunteered, donated and ride for this very special cause!

For the non-locals:
If you would like to donate to a good cause, visit their website by clicking here or their facebook page.

For the locals:
There is still time! If you want to attend the ride and or the after party, you can register at Blair Candy between 8:30-11 am tomorrow morning.

  • Sunday, Sept 2
    Benefiting Case McNulty and Tiffanie Evans
    Registration starts at 8:30 at Blair Candy Company, 3421 Beale Ave, Altoona (Former Imler's Bldg)
    Opening Ceremonies begin at 10:10 am
    Kickstands up at 11 am sharp!
    Escorted 100 mile ride thru Central PA
    Ride concludes at Glenn's Place, Claysburg, with a dinner from Holland Brothers and live bands.
    Registration is $20 per rider, which includes a t-shirt.


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