Alexandru's battle for a better life
Alexandru's battle for a better life
Alexandru's battle for a better life
Alexandru's battle for a better life
Alexandru's battle for a better life
This campaign is closed
Alexandru's battle for a better life
Alexandru Botan is a 4 year old boy diagnosed with Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), de novo SCN1A mutation. This syndrome is present in one of 20 000 children, and evolves in the first developmental period in the life of a normal baby. Convulsive seizures are long and these kind of crises are particularly resistant to medication. As well, they impede the child’s normal biological and cognitive growth. Alexandru has developmental impairments that affect his motor, behavioral and learning progress, including presenting symptoms of sensory integration malfunctioning. The life prognosis of a child with Dravet syndrome are at the moment, discouraging. This case is the only one genetically confirmed in the Republic of Moldova and respectively, the neuropediatrics do not have enough experience to monitor similar cases.
Alexandru was diagnosed in September 2013 version, CLINIC "Agostino Gemelli" in Rome, Italy, by Dr. Charlotte Dravet. The last check-up was done in May 2015 with corrections to the treatment. Alexandru is taking five antiepileptic medications (stiripentol, depakine, clobazam, potassium bromide, levitiracetam, and when having seizures - buccolam) that are very expensive (20 000 MDL (1007 USD) / month) and mostly unavailable in Moldova. Every year, Alexandru needs 240 000 MLD (12.084 USD) worth of medication. The treatment is for life. Although the child has been following the given treatment, the convulsive seizures became daily with more frequent status epilepticus periods of which some even go into cardiopulmonary arrest.
In order to appreciate the treatment it is important to monitor the child’s responses to the disease progression, done in the department of Neuropsichiatria infantile at Agostino Gemelli clinic in Rome, where we will benefit from consultations from dr. Charlotte Dravet herself.
The amount needed to cover travel, day hospitalization, accommodation and translator services are around 4300 USD. For the family to gather this amount is impossible, as Alexandru’s disability pension sums up to 730 MDL (37 USD).
I appeal to your good will and big heart to kindly help me in trying to secure a life without seizures for Alexandru, as well as helping the other children suffering from the syndrome through progressing medical knowledge and practice in the treatment of such a form of epilepsy.