My daughter was diagnosed on her first birthday with Joubert Syndrome; she still could not walk or crawl. I kept reading websites and posts only to find myself crying about what her future would be for her. After going to a genetics doctor, neurologist, ophthalmologist and therapist, her future was still undetermined.

After her first birthday, she began to crawl; then after her second birthday, she began to walk. After three years of physical therapy, and now speech and occupational therapies, she is beginning to run. She has Ataxia with Oculomotor Apraxia as well. We recently went to the University of San Francisco to get an ERG (electroretinogram), and the results were low vision. Now we are in a place where her vision for the future is undetermined.

After all the doctor’s appointments, blood tests and poking and prodding at my angel, I see the will power in her and the determination, and to me, she is my “normal” four year old princess. She will continue to have therapies for as long as she needs. She will always have a loss of balance and coordination, but I will continue to encourage her that she can do almost anything with practice and patience.

2 thoughts on “Kaidyn, Who Has Joubert Syndrome, Took Extra Time Learning to Walk”

  1. Marcela Oceguera-Maldonado says:

    To kaidyn”s mom I am so happy to know that your daughter is doing great. Secoondly my son is also born with Joubert syndrome and also goes to ucsf for treatment . Knowing that they have helped your daughter gives me hope that my son will get the best help he needs. Good luck to your daughter in the future and I hope that she keeps doing excellent.

  2. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/

    Best,
    Ilana
    Managing Editor

Comments are closed.

X