What a busy and fantastic day!

Tori got to spend time with some of her buddies…this is Parker from Maryland. He is eight months old.

  

We heard from several of the leading researchers and experts in Krabbe and other leukodystrophies.

It was so informative and we feel so encouraged to know that such innovative, rigorous, and continuous research is being done to find a cure for the disease.

No matter what cure may be found, early detection is still imperative. We must continue to push each state to add Krabbe to the Newborn Screening Test!

Tori thoroughly enjoyed the lectures 😉  

Brennan had a chance to visit with Jim Kelly for a few minutes to talk about Tori.
  

Marshall’s daddy, David, wanted to hold Tori. Marshall is in the background.

  
  
  

And then it was group picture time! You think your family portraits are difficult? Try adding in adaptive strollers!

The children here do not all have Krabbe – many different leukodystrophies are present, which explains the age of some of these children.

Jim Kelly gave each child an autographed hat ❤️
  
  
  

We had dinner with Tenley and her family ❤️

Tori wasn’t so sure about having another picture taken – even with Jim! 😉

Then, the highlight of the evening: a nine year old boy from Buffalo brought blankets that he makes for sick kids to all of our children. Kwentin collects recyclables and uses the money to go to the fabric store. He said his goal for this year is to make a blanket every day.  What an incredible young man! You can see his Facebook page here.

  
  
  
  

Tori’s blanket from Kwentin ❤️

  

It was an amazing day. 😄