Team Corinne
Donation protected
Corinne "Cori" is our beautiful daughter born in October 2017. Somewhere between 1-2 months of age, we noticed some motor developmental delays in our sweet girl. Not attempting to lift her head during tummy time and restricted posturing at her elbows and wrists tipped us off that something might not be right. After some respiratory complications and failure to thrive due to poor eating, Cori was admitted to Riley Children's Hospital in Indianapolis on February 5, 2018. Within a few hours, Cori was given breathing treatments which culminated to placement of a endotracheal (ET) breathing tube and then a gastrointestinal tube (G-tube). A DNA test then confirmed Cori is victim of a rare and ruthless genetic disorder known as Spinal Muscular Atrophy Type 1 (SMA1). This recessively inherited degenerative neuro-muscular disorder prevents signals from Cori's perfect brain making their way to her muscles. This affects every day breathing, eating, and movement. Worse yet, the disorder is progressive, meaning unused muscles atrophy and her condition worsens.
Fortunately both the creator of the universe and modern science have got Cori's back. See, timing of Cori's arrival into this world and admission to the hospital has worked out perfectly because we have been in the hands of the very best caregivers with Riley nurses, physicians, and all of the support therapies. In terms of medicine, a revolutionary drug known as Spinraza (nusinersen) was recently approved by the FDA to force Cori's remaining genetic makeup to work hard to produce the protein that's been missing.
At this time we have been completely showered in hugs, prayers, food, chocolate, coffee, gift cards, and cash. We will always welcome the hugs, prayers and the simplistic need to see familiar faces. However, we know that people simply want to help and that it's time for us to put pride aside. Our goal amount is just a number. We don't have any expectations with a set amount. With so many unknown expenses down the road, we do not have a solid plan yet, but know that funds will be used for:
*Hospital and Physican Bills
*Prescription medication bills
*New equipment (braces, wheelchair, respiratory support machines, home/vehicle modifications, etc.)
*Home health support (nurses, OT, PT, ST)
*Intermittent time away from work
We have also decided that since we are unsure of what our future looks like financially, we intend to use a portion of the funds received to go towards donating to CureSMA.org
Fortunately both the creator of the universe and modern science have got Cori's back. See, timing of Cori's arrival into this world and admission to the hospital has worked out perfectly because we have been in the hands of the very best caregivers with Riley nurses, physicians, and all of the support therapies. In terms of medicine, a revolutionary drug known as Spinraza (nusinersen) was recently approved by the FDA to force Cori's remaining genetic makeup to work hard to produce the protein that's been missing.
At this time we have been completely showered in hugs, prayers, food, chocolate, coffee, gift cards, and cash. We will always welcome the hugs, prayers and the simplistic need to see familiar faces. However, we know that people simply want to help and that it's time for us to put pride aside. Our goal amount is just a number. We don't have any expectations with a set amount. With so many unknown expenses down the road, we do not have a solid plan yet, but know that funds will be used for:
*Hospital and Physican Bills
*Prescription medication bills
*New equipment (braces, wheelchair, respiratory support machines, home/vehicle modifications, etc.)
*Home health support (nurses, OT, PT, ST)
*Intermittent time away from work
We have also decided that since we are unsure of what our future looks like financially, we intend to use a portion of the funds received to go towards donating to CureSMA.org
Organizer
Gareth Shields
Organizer
Indianapolis, IN
