Verified by Tooba

Ilham undergoes a course of rehabilitation

Blue Bird

Charitable foundation · Astrakhan region

collected

of RUB 92,391

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Ilham has a rare genetic disease-Pitt Hopkins syndrome. There are only about 300 children with this disease in Russia. In Astrakhan, Ilham is the first examined child with this syndrome.

Thanks to the funds collected on the Tooba mobile platform, Ilham is undergoing another habilitation course with specialists in the field of physical and sensory-dynamic development. Also, the boy will undergo 3 courses of bioacoustic correction of the brain in a year.

The charitable fund is preparing the report

About the campaign

Ilham has a rare genetic disease and requires a course of habilitation

Ilham has a rare genetic disease-Pitt Hopkins syndrome. In Russia, there are only about 300 children with this disease. In Astrakhan, Ilham is the first examined child with this syndrome. Up to 7 months, Ilham developed like an ordinary child. Later, the mother began to notice that the child does not turn over on its own. After long consultations with doctors, a diagnosis was made - perenatal CNS lesion. By the age of 1 and 9 months, Ilham was diagnosed with cerebral palsy, but neurologists for a long time doubted the diagnosis of dianosis and sent the boy's parents to a geneticist. After passing numerous tests, this rare syndrome was revealed.

Ilham is diagnosed with a developmental delay. At 3 years and 8 months old, the boy does not walk, does not crawl, does not serve himself. There are intellectual disabilities. Ilham does not speak. Every 2-3 months, the boy goes through rehabilitation programs for massage and physical therapy. Regularly engaged in ABA therapy.

Ilham will have to pass the next habilitation course