Donation
For Luana
"I WANT TO RUN" - FIRST STEP THERAPY FOR LUANA
For Luana and us, First Step therapy has been an integral part of life since 2014. The support we receive as a family is immensely important. For Luana, this means developing her full potential and beyond. Affected families often hear phrases like "Your child may never walk". Together with the specialists at First Step and a lot of hard work, Luana can now walk by the hand. This is an indescribable feeling for us.
Luana's life
Luana is 9 years old and has two younger brothers. The start in life was not easy for Luana. And even when she got older, she was unable to communicate with her parents and siblings. But thanks to the love of her parents and brothers, she is developing well and can already take a few steps, even though the medical profession said she would never walk. First Step Therapy, which the family learned about through the support association for children with rare diseases, has contributed to this.
Luana's illness
Mutations in the NACC1 gene can lead to different symptoms and varying degrees of disability. The following symptoms relate to Luana but are very similar in the few known cases.
SYMPTOMS
- Severe global developmental disorder
- Cerebral movement disorder with incipient spasticity
- Proportional short stature
- microcephaly
- Epilepsy with seizures
- cataract
Luana's family thanks for your donation
We very much want Luana to become as independent as possible so that she can master as much as possible on her own in her later life. Luana is ready for further developmental steps right now and we want to exploit this potential with the help of First Step therapy. The support from the therapists in Israel helps us to support Luana in her everyday life. We are making small progress - we will keep at it.
We thank you from the bottom of our hearts for your donation and the support you give Luana.