Rare_disease_short

[Music] son raghav uh he's now two and a half years old uh when he was born back in 2018 um we knew something was wrong with him uh he was not able to feed normally like other kids so within 24 hours we had a pediatrician walk into our office and say that something was wrong with him but they didn't really know what it was they just said this is going to affect your son for the entirety of life of his life and we have to figure out what it is so our world just shook you know my husband and i we held our hands um we just didn't know how to process it we were ready for you know sleepless nights and changing diapers but this was not something that we expected so that was a life changing moment for us [Music] and we were told that there was no cure for this disease so it was entirely on our family to try and figure out what was going on so my husband and i we put together a team of researchers a team of scientists who could find a cure for raga and that's the path that we've been on for the past one and a half years we are pursuing gene therapy as a way to you know help raghav lead a better quality of life [Music] so with this amazing support support system and this you know unfailing love that we have here um you know we get the hope and the motivation to find a cure for raga and achieve anything that's ahead of us [Music] you know we spent a lot of time being upset and depressed but it was not doing any good so it's very easy to get into that loop of being sad and not doing anything so even if it's harder i think it's important to put one foot in front of the other just be very happy for what we have today and keep going on it so i keep telling that to myself um and second i try and serve the community as much as possible be it homelessness b is education or whatever that is i try and give back to the community just injecting some positivity into the world with the hope that it would be returned back to me uh so i i that's been just very therapeutic for me i highly recommend that for anyone who's going through you know tough situations in life