Lemonade Sales in Pennsylvania
On July 6th, a lemonade stand in Cranberry Township, Pennsylvania raised funds to support CDG Research. The stand was set up by TJ (age 10) and Maya Wannamaker (age 13) and their neighbours Annabelle (age 12) and Lucas Neuschwander (age 14).
Maya and TJ's brother, Madon (age 5) was diagnosed with ALG8-CDG (1h) in December 2014. ALG8-CDG is a rare form of CDG with approximately 10 out of 25 children diagnosed still living. Madon is the youngest of 3 wonderful siblings. Madon faces medical as well as developmental obstacles in his life. He is beginning to walk independently, however, walks best with supports. He uses few verbal words, but uses sign language. He is currently learning to use an iPad or pictures to talk. He understands most of what you say to him. Madon has many medical barriers in his life: bleeding and clotting disorder, epilepsy, elevated liver counts, pericardial effusion and a sub-aortic membrane. Madon loves people, music, sports, and being a part of the action in his busy house.