Nova's Medical Journey

Nova is such a sweet little girl. I’ve had the gift of knowing Nova since she was born. Her laugh is contagious and she is just so fun! Since Nova was born, she has had difficulty gaining weight. She has had multiple hospital stays, but the doctors could not figure out why. Nova has also had cataracts surgery. She now gets to wear these adorable glasses! After 18 months of countless tests, Nova was diagnosed with RCDP: Rhizomelic Chondrodysplasia Punctata. This is an extremely rare disorder, like EXTREMELY rare. There are only about 100 kids in the whole world with this disorder! She is also part of an even more rare group of just 16 kids with the specific variant Nova has. RCDP is a fatal form of dwarfism and is characterized by skeletal abnormalities, seizures, cataracts, intellectual disabilities, and developmental delay.

After Novas diagnosis, she had another surgery to have a feeding tube placed. (Maddi had to advocate for Nova to get this, the doctors knew nothing about her diagnosis and didn’t think she needed it). The good news here is that Nova is gaining weight now with this feeding tube! This is a huge win for Nova!There’s more good news! Maddi has done an incredible amount of research and has found a team of doctors in Delaware that are doing a lot of research on RCDP. Maddi and her family get to go next week to meet with these doctors and learn more about Novas diagnosis and how they can help her.

Maddi hasn’t asked for any help from anyone. I mean, she made Mac and Cheese (she makes the best Mac and cheese by the way) for the homeless in the cold weather while supporting Nova and her needs. So now I have the opportunity to share her story (with her permission) and ask for whoever feels moved to help support Nova and her medical journey. Maddi really just wants to advocate for her daughter and give her the best life possible, but they are swimming in medical bills and have many trips to Delaware in the future. Let’s help this sweet girl and her family by donating even just $5 for a fancy coffee while they are on their trip.