Early in January 2018, this adorable little kid was born. For sure - we're biased though seriously don't you agree? Ebba is the happiest, most curious, stubborn, contact-seeking and kind kid we've ever met. Always a smile on her face, always these wide open eyes, never missing out on a thing.
Ebba was born profoundly deaf and... that was hard to grasp at first. Though with early use of sign language, and from 9 months of age bilateral cochlear implants, our communication has never really been limited. She's 22-months-old now, sings "Twinkle Twinkle Little Star," and tells us what she'd like to have on her sandwich. We are really amazed by the progress.
But... oh why is there always a but?... in June this summer we were called to a meeting with Ebba’s consultant at the University Hospital in Lund, Sweden. We had participated in a new study with genetic screening of babies born deaf, and we were given the results. That Ebba has Usher Syndrome 1F really came as a shock to us. We had fought and struggled for 1.5 years to give her the best possible start in communicating, and now you say she will gradually lose her vision too? The cruelty of her being deprived of another sense is just impossible to take in.
So - another race has begun. The one against time.
There is progress being made. Just not fast enough! It is so insanely frustrating that research funding can be the single one factor determining if Ebba will be able to have a life with or without her eyesight. Keeping Ebba’s vision would mean the world to our family.
Of all this, little Ebba knows nothing. Please help us in this race, finding a cure so that we won't have to tell her - until after we've won.