Hope 4 Caoilainn
Donation protected
Four months ago, Caoilainn’s motor skill function began to regress, then her growth, and now she cannot latch onto anything except her pacifier. Over the past couple of months, the O’Donnell family has been in and out of the hospital trying to figure out what exactly is going on with Caoilainn. She was admitted into Loma Linda Children’s Hospital where mommy and daddy are finally being heard! Once admitted, on February 12th, 2015, the doctors began running tests. After what seemed like endless poking and prodding, the MRI scans gave us our answer. Caoilainn Nicole O’Donnell has been diagnosed with Krabbe Leukodystrophy Disease.
Krabbe leukodystrophy is a degenerative disorder that affects the nervous system. It is caused by the shortage (deficiency) of an enzyme called galactosyleramidase (GALC). This enzyme deficiency results in defective myelin, the covering that insulates many nerves. Krabbe disease is considered part of a group of disorders known as leukodystrophies, which result from the imperfect growth and development of myelin. Krabbe disease usually begins before the age of 1 (early-onset form). Initial signs and symptoms often include feeding difficulties, episodes of unexplained fever, stiff posture, and developmental delay. As the disease progresses, muscles continue to weaken, affecting the infant’s ability to move, chew, swallow, and breathe. Affected infants also experience vision loss and intellectual disability. Krabbe disease is caused by mutations in the GALC gene and is inherited by being passed down through families.
As Caoilainn’s Auntie and Fairy Godmother (as her mother, my best friend, named me), I have begun this donation page for the soul purpose to help Caoilainn and her family cope and deliver possibilities for the life she does have, here on earth with all who love her. All donations will be used for a variety of things, including: Any medical expenses that may surface during the care of Caoilainn. Any living expenses to make the stresses of finances lessen while mommy and daddy are home caring for their daughter.
We are praying for a miracle. Please lend a hand in prayer, positive vibes, whatever it is you believe in for Miss Caoilainn Nicole O’Donnell. She is the light of many lives. Thank you.
To help spread awareness of Krabbe Disease, for every $25 donation or more, we will be be mailing out car decals like the one below. Please email your address to receive your decal:
[email redacted]
Krabbe leukodystrophy is a degenerative disorder that affects the nervous system. It is caused by the shortage (deficiency) of an enzyme called galactosyleramidase (GALC). This enzyme deficiency results in defective myelin, the covering that insulates many nerves. Krabbe disease is considered part of a group of disorders known as leukodystrophies, which result from the imperfect growth and development of myelin. Krabbe disease usually begins before the age of 1 (early-onset form). Initial signs and symptoms often include feeding difficulties, episodes of unexplained fever, stiff posture, and developmental delay. As the disease progresses, muscles continue to weaken, affecting the infant’s ability to move, chew, swallow, and breathe. Affected infants also experience vision loss and intellectual disability. Krabbe disease is caused by mutations in the GALC gene and is inherited by being passed down through families.
As Caoilainn’s Auntie and Fairy Godmother (as her mother, my best friend, named me), I have begun this donation page for the soul purpose to help Caoilainn and her family cope and deliver possibilities for the life she does have, here on earth with all who love her. All donations will be used for a variety of things, including: Any medical expenses that may surface during the care of Caoilainn. Any living expenses to make the stresses of finances lessen while mommy and daddy are home caring for their daughter.
We are praying for a miracle. Please lend a hand in prayer, positive vibes, whatever it is you believe in for Miss Caoilainn Nicole O’Donnell. She is the light of many lives. Thank you.
To help spread awareness of Krabbe Disease, for every $25 donation or more, we will be be mailing out car decals like the one below. Please email your address to receive your decal:
[email redacted]
Organiser
Sheri Hester-Esparza
Organiser
Hemet, CA
