Aleksandr Kostanyan was born on 2017 in Yervan, Armenia. On 52nd day of his life he was diagnosed with SMA Type I. Aleksandr's family was invited by Stanford University for participation in clinical trial. The results are dramatically effective. However, this fundamental and very effective gene replacement treatment has now necessitated that he continue to receive aggressive treatment to assure that his pulmonary health is stable, despite breathing weakness, and that he optimize his mobility and independence despite his permanent muscle weakness. Since complete and complex medical care is not available in Armenia for this newly created group of genetically treated patients with long term spinal muscular atrophy type 1. Aleksandr needs to being able to stay in California so that he can continue to receive the necessary medical care and support. Help Aleksandr's family to overcome difficulties...
The collected donations will be deposited in St. Andrew Armenian Church’s bank account. As the Kostanyan family incurs the expenses, documentation such as receipts, invoices , etc. would be submitted to the church. The parish council chairman will review and approve the disbursement of the expenses, and the funds would then be transferred to the family’s bank account.
To support Alexandr’s medical needs, the family has to be close to Stanford to continue whatever treatment the doctors specify as well as any emergency situations that he may need. Even though his experimental treatment for the SMA Type 1 virus is complete, Alexandr still has a long road to recovery, including, but not limited to, physical and occupational therapies.
The following are estimates of what the funds will be applied to:
· Housing: $2,500.00 per month
· Groceries: $1,000.00 per month
· Personal & household supplies: $350.00 per month