- Ollier disease
- Interviews
Dana mother of naama 10 years's interview
How did all start?
When my daughter was 7 I've noticed a change in her left ancle. We went to the er and asked for an x ray. At first i was declined "all is well with your daughter" they said. But i am an oncology nurse and first of all i am amother and i knew somthing was wrong. After talking the doctor to do the x ray, he came back with sad face: "you were right there is a tumer. Then we found 4 more....
Do you already have a diagnosis? How long did it take you to get it?
After finding 5 tumers on our daufhter's left leg. It took a year for diagnos. At 8 years old Naama had a surgery and biopsy.
For what medical specialties have you been treated? What has been the most useful specialty for your?
We see a rare disease specialist an orthopedist and orth oncologist.
But we don't feel like any of them trully know any thinf about ollier
What has been the most useful thing for you so far?
Joining the ollier groups on facebook
Finding a dance teacher for Naama
What have been your biggest difficulties?
Not knowing we are doing all that we can. It feels like we are waiting for the next crisis as opposed to preventing it.
As of now seeing Naama growing to restriction in her walking. Seeing her left leg not growing is dificult.
How has your social and family environment reacted? Have your social or family relationships changed?
No,
What things have you stopped doing?
Our daughter naama stopped ballet classes, but she started praivet dance classes
What do you think about the future?
I feer of not knowing what limitations our daghter will have. But I trully know that each of us hve its oun limitation and i trust that Naama will make the best out of hers. And we will be there for her.
If you had to describe your life in a sentence, what would it be?
Thank you life
