Posts Tagged ‘NPCFund’
Happy March
No news is good news? I guess that can have a meaning in several different ways. 🙂 Hoping we receive good news this month on a very special opportunity. It wouldn't be about the Stults family but a very rare chance to affect a lot of lives.
We want to thank everyone for their continued support of our family. Brisan and Parker have been doing OK. No hospital visits since the last update in which Brisan was in for a staph infection. It appears he is getting all suited up for recovery since that time. They both have had a few projectile vomits after their feeds but nothing super concerning. We also have a new neurologist & pediatrician. We needed a new neuro that could help us manage this disease. Our pediatrician was a very incredible woman along with her staff but we honestly needed that doctor to be at Children's Mercy Hospital along with our doctors. Tough decision and I hope that no feelings were hurt doing the transition. 🙁
Duncan is just the silliest little boy ever. We really need to get him involved in some type of preschool so he can interact more with little ones to develop socially. Unfortunately Brisan and Parker are not the best peer models :(.
Jennifer has been baking for a few friends here and there ( Stults' Sweets) and any money that she makes she will donate 20% to the Niemann-Pick Children's Fund which is our 501(c)3 we organized at the end of 2008. If you haven't already been to our page on Facebook please visit and “like” at www.Facebook.com/NPCFund. Our goal this year is to go over 1,000 “likes”. More importantly I hope we can generate awareness for Niemann-Pick Type C disease and rare disease in general. You can also find us on twitter at www.twitter.com/NPCFund.