A Breath of Life
A surgery to implant a breathing stimulator can save Ilya Kokorev
Ilya Kokorev, 18 months old, suffers from congenital central hypoventilation syndrome (CCHS). He needs to undergo surgery to implant a breathing stimulator. The surgery will be performed at the Center for Autonomic Medicine in Pediatrics, Ann& Robert H. Lurie Children’s Hospital (Chicago, USA). $23,375.
Ilya and Egor are non-identical twins. A few hours after birth, Ilya started turning blue so he was immediately moved to the intensive care unit. For more than six months, my baby boy was connected to a ventilator for life support. The doctors in Voronezh diagnosed him with a rare disease (CCHS) in which the function that controls breathing is impaired. To confirm the diagnosis, we came to Moscow. There we learned that little Ilya’s breathing is adequate for awake breathing, but when he is asleep his breathing is not adequate to safely sustain him. With the help of many kind people in Moscow, we bought a stationary ventilator. The doctors taught us how to use it and we could finally leave the hospital to return home. Now Ilya has a doctor who supervises him in Russia, but Ilya`s doctor in Chicago has determined that Ilya is very fragile and totally dependent on the ventilator for life support awake and asleep. In Russia, this complicated disease (CCHS) is not treated, but the world has a life-saving solution – a breathing stimulator (diaphragm pacemaker), which is implanted on the phrenic nerves to stimulate the diaphragm and provide breaths. The sooner the diaphragm pacemaker implant is completed, the sooner little Ilya will be able to get on with the business of being a child by having freedom from the mechanical ventilator! Little Ilya is already developmentally behind his twin brother Egor. Ilya doesn’t talk and he is barely trying to walk. My son can be helped in America, but the cost is huge. We are young parents with an income of $1,700 a month. Yet to save Ilya we need hundreds of thousands of dollars. Your kindness and generosity is our only hope. Anna Kokoreva, Voronezh Region.
To save 18-months-old Ilya Kokorev$23,375 is needed.
Konstantin Panchev, Intensivist of Perinatal Center, Voronezh:
We have been following the boy since birth. He can stop breathing without any warning; there is no way to control it. Even though he is connected to a ventilator at night, the risk of sudden death remains. Only a stimulator implant can save this child. Doctors in the US are prepared to do it. We hope that this surgery will solve Ilya’s breathing difficulties and allow Ilya to develop and grow normally. We will continue to follow him after the operation.
Debra Weese-Mayer, Medical Director, Center for Autonomic Medicine in Pediatrics, Ann and Robert H. Lurie Children's Hospital (Chicago, USA):
Ours is the only hospital where stimulators are implanted making only tiny incisions – therefore there is less pain, a faster recovery, and it is much more aesthetic. For one week before the operation, we observe the baby’s breathing as he sleeps, eats, and plays, to thoroughly assess the effects of the disease and the level of support he needs. It’s much more difficult to do this in active children over the age of two. An operation now can allow Ilya to develop normally and lead a normal life.
The cost of Ilya’s surgery is $527,438. Rusfond helped raise the funds needed. In October and then again in December, Ilya is expected at the hospital. Another $23,375 is needed for a new ventilator, accomodations, food, transportation and other associated expenses for Ilya and his mother while in the United States.
Dear friends! If you decide to help Ilya, then please don’t let the cost stop you. Your donation in any amount will be gratefully accepted. You can contribute to Rusfond USA using PayPal or by sending a check made payable to “Rusfond USA” to Rusfond USA, 420 Lexington Avenue, Suite 300, New York, NY 10170. Thank you.