Help Get Addie to Boise!
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My seven-year-old granddaughter, Addison, has been diagnosed with Glycogen Storage Disease Type 0, a rare, genetic, metabolic disorder. One of the leading GSD specialists in the country is in Boise, Idaho at St. Luke's Children's Hospital. She has already reviewed Addison's case and wants to see her. She believes she can help!!!
Dr. Laurie Tsilianidis can, hopefully, develop diet, treatment, and emergency room plans that will help our family and local doctors learn how to best care for Addie. This is an important opportunity for her because there are no other physicians or specialists in our area who can provide this type of care and guidance. Dr. Laurie's career has been spent helping GSD patients and we cannot afford for Addison to miss this opportunity!
WE NEED YOUR HELP! Whatever you can donate will help offset costs to get Katie, Shanaka, and Addison to Idaho for this appointment and potential treatment. It will also help with costs associated with her continuous blood glucose monitor.
As I understand it, GSD is a genetic condition that prevents patients from storing glycogen, a complex sugar needed for energy. This need increases during sleep, fasting, over-exertion (if you meet Addie you will understand this) and even illness.
GSD causes her body to produce ketones, a toxic acid that rises when blood sugar levels are low. High levels of ketones can cause brain and other organ damage. They also cause sickness and vomiting which, in turn, causes blood sugar levels to drop even more thus raising ketone levels even more!
Addison relies on a special cornstarch and protein drinks to keep this all in balance but even a simple cold can upset her and send her blood sugar levels plummeting. This could result in seizures, coma and even death.
Because GSD is extremely uncommon, much of the information and medical advice we've received to date has been limited to what the doctors Addison is currently seeing either know or find out. A specialist will be able to give specific advice about Addie's case allowing Katie and Shanaka to learn exactly what they need to know to care for Addison's needs.
Katie and Shanaka are reluctant to ask for help but there comes a time when it is necessary. They both work full time and have three other very active children. There are many other expenses associated with Addie's care at this time, some covered by insurance, some not, but the cost of this trip would put a huge strain on the family's budget so we are asking for your help to get them out (and back!!!) to Boise for this appointment.
We truly feel that Dr. Laurie can provide the resources and information we need to provide Addison the best care possible to manage her GSD. Please consider a donation if you can. We will all be forever grateful.
Dr. Laurie Tsilianidis can, hopefully, develop diet, treatment, and emergency room plans that will help our family and local doctors learn how to best care for Addie. This is an important opportunity for her because there are no other physicians or specialists in our area who can provide this type of care and guidance. Dr. Laurie's career has been spent helping GSD patients and we cannot afford for Addison to miss this opportunity!
WE NEED YOUR HELP! Whatever you can donate will help offset costs to get Katie, Shanaka, and Addison to Idaho for this appointment and potential treatment. It will also help with costs associated with her continuous blood glucose monitor.
As I understand it, GSD is a genetic condition that prevents patients from storing glycogen, a complex sugar needed for energy. This need increases during sleep, fasting, over-exertion (if you meet Addie you will understand this) and even illness.
GSD causes her body to produce ketones, a toxic acid that rises when blood sugar levels are low. High levels of ketones can cause brain and other organ damage. They also cause sickness and vomiting which, in turn, causes blood sugar levels to drop even more thus raising ketone levels even more!
Addison relies on a special cornstarch and protein drinks to keep this all in balance but even a simple cold can upset her and send her blood sugar levels plummeting. This could result in seizures, coma and even death.
Because GSD is extremely uncommon, much of the information and medical advice we've received to date has been limited to what the doctors Addison is currently seeing either know or find out. A specialist will be able to give specific advice about Addie's case allowing Katie and Shanaka to learn exactly what they need to know to care for Addison's needs.
Katie and Shanaka are reluctant to ask for help but there comes a time when it is necessary. They both work full time and have three other very active children. There are many other expenses associated with Addie's care at this time, some covered by insurance, some not, but the cost of this trip would put a huge strain on the family's budget so we are asking for your help to get them out (and back!!!) to Boise for this appointment.
We truly feel that Dr. Laurie can provide the resources and information we need to provide Addison the best care possible to manage her GSD. Please consider a donation if you can. We will all be forever grateful.
Organizer and beneficiary
Mike McGowan
Organizer
Hannibal, OH
Shanaka Horner
Beneficiary
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