Parents of a strong 3 week old

[GiraffeOnesie]

Hello all, our newborn was diagnosed with Congenital Nephrotic Syndrome and a few other rare “issues” along with this. Does anyone know any resources such as books for families dealing with kidney issues or rare diseases? Everything seems to keep stacking against our child and we want to stay strong and learn tips on how to be there. Thank you.

[TakTmkMrk]

When my son was diagnosed I went to the National Kidney Foundation website. They have a plethora of information and if I couldn’t find the information myself I contacted them an they directed me to resources. My local chapter was also helpful in getting me introduced to families in similar situations. I remember a feeling of isolation and almost hopelessness and spent hours trying to get as much information as possible while trying to be “normal” and nurture my son. This format was not available to me so i can’t speak to the level of support it offers. Hopefully you get answers and feel comfortable utilizing this format.

[AHP2018 NKF Ambassador]

I'm so sorry to hear about your baby. You may want to start with: rarediseases.org/ although you may need to call them because I can't find that disease listed on their website. My daughter was also born with a very rare genetic disease and we needed to work closely with the world experts at the Mayo Clinic to diagnose her and then to figure out her treatment. Is your physician communicating with experts on the disease? I would strongly recommend you find the most knowledgeable doctors to help treat your child.

[KidneyCoach]

Try kidneyschool.org