Raffi Kodikian- Rett Syndrome: What Little We Know About this Rare Genetic Mutation

Raffi Kodikian

October 10, 2021

Raffi Kodikian- Rett Syndrome: What Little We this Rare Genetic Mutation

Raffi Kodikian on Rett Syndrome: What Little We Know About this Rare Genetic Mutation

As an insurance professional, Raffi Kodikian is accustomed to working with people whose lives have been upended by a serious illness. When Raffi’s young niece was diagnosed with Rett syndrome, though – a rare genetic mutation that affects less than 1,000 people in the US a year – it really hit home. Now, Raffi Kodikian has made promoting awareness about this terrible condition and working towards a cure one of his most important life goals.

What is Rett Syndrome?

Rett syndrome is a genetic neurological disorder that almost exclusively affects the female population and is estimated to occur in 1 out of every 10,000 female births. While Rett syndrome is not a degenerative condition, and most individuals who suffer from this illness can expect to live to middle age and beyond, the effects of Rett syndrome are still painfully debilitating. The hallmark symptom of Rett syndrome is near constant, uncontrolled movement of the hands. In addition to this loss of motor control, other symptoms of Rett syndrome include symptoms such as breathing issues, loss of muscle tone, speech impediments, sleep disturbances, and a slowed growth rate for the patient’s head, feet, and hands.

According to Raffi Kodikian, watching his beloved niece go through this condition has been heartbreaking. In spite of her condition, though, she has maintained a positive outlook on life and is determined to enjoy her childhood as much as any other child. Raffi Kodikian points to his niece’s ongoing courage and optimism as a major source of inspiration in his own life and a motivation to continue fighting for a cure to this rare genetic disease.

The Search for a Cure to Rett Syndrome

As of right now, there is no known cure for Rett syndrome. However, Raffi Kodikian has hope that this won’t always be the case. Right now, numerous organizations are working to raise Rett syndrome awareness and generate funds to help the doctors and scientists working towards a cure. So long as the possibility for a future cure remains in place, Raffi has promised to continue fighting for his niece and the women all over the world who share her condition.
Given how rare Rett syndrome is, rallying people behind the fight for a cure can sometimes be a real challenge.

However, Raffi Kodikian hopes to point out the fact that even though Rett syndrome is rare, there are still tens of thousands of people all over the world whose quality of life depends on finding a cure. For Raffi, his young niece, and the countless other people affected by this disease, nothing is more important than the hope for a future cure.