42:I[185,["/_next/static/chunks/08z4tkzvltetr.js","/_next/static/chunks/121~yigv24_j6.js","/_next/static/chunks/0jo3du-icy6v2.js","/_next/static/chunks/15cy49d~_zsjj.js","/_next/static/chunks/0..ktetnpeix7.js","/_next/static/chunks/08cz-ztcfuxe..js","/_next/static/chunks/0i6hzvr84kc1r.js"],"SendEmailButton"] 45:I[63625,["/_next/static/chunks/08z4tkzvltetr.js","/_next/static/chunks/121~yigv24_j6.js","/_next/static/chunks/0jo3du-icy6v2.js","/_next/static/chunks/15cy49d~_zsjj.js","/_next/static/chunks/0..ktetnpeix7.js","/_next/static/chunks/08cz-ztcfuxe..js","/_next/static/chunks/0i6hzvr84kc1r.js"],"AddToLibraryButton"] 46:I[29721,["/_next/static/chunks/08z4tkzvltetr.js","/_next/static/chunks/121~yigv24_j6.js","/_next/static/chunks/0jo3du-icy6v2.js","/_next/static/chunks/15cy49d~_zsjj.js","/_next/static/chunks/0..ktetnpeix7.js","/_next/static/chunks/08cz-ztcfuxe..js","/_next/static/chunks/0i6hzvr84kc1r.js"],"ShareButton"] 47:I[58016,["/_next/static/chunks/08z4tkzvltetr.js","/_next/static/chunks/121~yigv24_j6.js","/_next/static/chunks/0jo3du-icy6v2.js","/_next/static/chunks/15cy49d~_zsjj.js","/_next/static/chunks/0..ktetnpeix7.js","/_next/static/chunks/08cz-ztcfuxe..js","/_next/static/chunks/0i6hzvr84kc1r.js"],"ProcessEpisodeButton"] 48:I[45269,["/_next/static/chunks/08z4tkzvltetr.js","/_next/static/chunks/121~yigv24_j6.js","/_next/static/chunks/0jo3du-icy6v2.js","/_next/static/chunks/15cy49d~_zsjj.js","/_next/static/chunks/0..ktetnpeix7.js","/_next/static/chunks/08cz-ztcfuxe..js","/_next/static/chunks/0i6hzvr84kc1r.js"],"SignupCTA"] 43:T4f0,

Raising a child with a rare and complex disease is a full-time job… or more.

Constant advocacy.

Almost every interaction regarding the child requires additional effort to bring people or the system up to speed. And this gets piled on top of the normal activity and chaos of life…work, school, the other kid, loss of a family member.

There is help available, but that is just one more task to manage. Applying, interviewing visiting nurses or personal care aids, scheduling, handling unexpected absences, and managing performance. While the extra help is welcomed, it comes at a cost.

On top of this, add frequent admissions to the hospital. Each hospitalization completely disrupts the family, interferes with work, and creates new challenges.

Time management. Fatigue. Relationship tensions.

This burden gets multiplied when dealing with multiple medical systems. These systems do not communicate well with each other. Big Academic Medical Centers may have more capabilities, but often they are too far away to be feasible for emergency care.

Brittany opens up and talks about these challenges and how she and her family manage them. More importantly, she talks about the personal toll this all takes.

44:T510,Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder. That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The prognosis is completely unknown. They were alone. They were scared. And then they went into action. And now they want to share their story. Every couple of weeks Raising Rare will give you an update on baby Raghav as he grows up. We will also share how Sanath and his wife Ramya are driving toward a treatment for their son. We will explore the science that Sanath is initiating, their efforts to fund that research, and the people they meet along the way. We will also hear how the family adjusts to challenges and changes that they are faced with. Most importantly, we will share the wisdom they gain along the way so that other Rare Parents can learn from their steps and missteps. We don’t know where this story will go. We do know we