Rare Disease Day Spotlight

 

RARE DISEASE DAY 2021 SPOTLIGHT

I would like to thank two amazing human beings that have helped Vivienne along her journey with Propionic Acidemia. First, I would like to thank Ms. Heather, who is Vivienne’s Nutritionist/Dietician. Since she took on Vivienne’s case, Vivi’s health has improved. She has made such a difference in Vivienne’s life! Now, I know why so many parents emphasized the importance of a great dietician! Ms. Heather has been very caring, very attentive,a great listener and very committed to Vivi’s case!

Second, I would like to thank Dr. Baker! Dr. Baker has been an extraordinary geneticist! His dedication and amazing care has helped Vivi stay away from many hospital stays. I feel so blessed in having both Dr. Baker and Ms.Heather as Vivienne’s care team. They both have gained my confidence. Dr. Baker and Heather truly made a difference in Vivienne’s life!

Thank you from the Lopez Family!

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Nalani has been lucky to have some amazing people in her life helping her along in her journey. She has been attending a weekly social group at Coeur Academy in Missouri for about 6 years now. They get together, talk about their week, plan activities and play games. They cook a “Thanksgiving feast” and exchange gifts on Christmas. They go shopping and go out to eat together. She is the only girl and tells everyone she meets that she has 4 boyfriends. Nalani is extremely social and this program has given her a group of true friends. I am so thankful to them. I don’t know what she would do without Ann, Sarah and her boyfriends at social group! – Angela  (picture of Nalani and her Teacher)