Rylan's Trip To Delaware
Donation protected
Rylan started showing symptoms at about 5 months. After being directed by multiple doctors to try over 10 medications and an extreme diet, a cause has not been determined. Also, his spasms show no signs of change. Typically it’s recommended that Infantile Spasms be treated or a cause found no more than 2 months from the start of symptoms. We are unfortunately way past what’s “typically recommended”.
Obviously development is HUGE for Rylan at this point. Since starting treatment, he’s reverted back to a 3-month mark of development and no additional progress in development has been made.
This has been such a crazy time in our lives as you all can imagine. We wouldn't be where we are today if it weren't for our amazing family and friends. It's heartbreaking seeing your child go through this wondering what it is they're thinking as they themselves are going through it. With the countless appointments, procedures, tests and ER overnighters under Rylan’s belt, we continue to look at different options.
Currently, we have a potential source, which could lead us to lots and lots of answers (since we still have yet to receive ANY). Several parents within our support group have recommended Dr. Chugani. He is nationally recognized, sought after and award winning Dr. in Neuroscience who continues to pave a path for treating Infantile Spasms. Curveball is, he practices out of Delaware. After multiple email/phone conversations, we as a family believe that Dr. Chugani is Rylan’s best chance at beating this. He has expressed a sincere desire to help Rylan and urgently invited us to come in March or April for immediate testing. There we would stay at the hospital and Rylan can be monitored under his care.
Some family members and friends have steered us towards starting a go fund me to get us closer to making this trip happen. Anything helps and is more than appreciated. We're all on Rylan's side and he is such a brave little fighter! We're going to get through this and come out bigger and stronger. Little by little we will get there. We believe it.
Obviously development is HUGE for Rylan at this point. Since starting treatment, he’s reverted back to a 3-month mark of development and no additional progress in development has been made.
This has been such a crazy time in our lives as you all can imagine. We wouldn't be where we are today if it weren't for our amazing family and friends. It's heartbreaking seeing your child go through this wondering what it is they're thinking as they themselves are going through it. With the countless appointments, procedures, tests and ER overnighters under Rylan’s belt, we continue to look at different options.
Currently, we have a potential source, which could lead us to lots and lots of answers (since we still have yet to receive ANY). Several parents within our support group have recommended Dr. Chugani. He is nationally recognized, sought after and award winning Dr. in Neuroscience who continues to pave a path for treating Infantile Spasms. Curveball is, he practices out of Delaware. After multiple email/phone conversations, we as a family believe that Dr. Chugani is Rylan’s best chance at beating this. He has expressed a sincere desire to help Rylan and urgently invited us to come in March or April for immediate testing. There we would stay at the hospital and Rylan can be monitored under his care.
Some family members and friends have steered us towards starting a go fund me to get us closer to making this trip happen. Anything helps and is more than appreciated. We're all on Rylan's side and he is such a brave little fighter! We're going to get through this and come out bigger and stronger. Little by little we will get there. We believe it.
Organizer
Kelcey Hathaway
Organizer
Seattle, WA
