Help for Emma
Donation protected
Hello, my name is Eric Dunton and I am in need of some help. My sister, Liz, has been given some devastating news; her 10 year old daughter, my niece, Emma has just recently been diagnosed with a brain condition known as Alexander’s Disease. After suffering from severe headaches and weight loss for two years, tests have confirmed her diagnosis. Unfortunately, there is no known treatment or cure for Alexander’s, which is a degenerative, neurological condition.
My sister’s younger daughter, 8 year old Julia has previously been diagnosed with Epilepsy and has been suffering from significant seizures since the age of 3. Julia will now need to undergo the same testing to determine if she has Alexander’s Disease as well.
The initial diagnosis was made in Rockville, MD but due to Emma' inability to eat the amount of food necessary for growth and survival she was admitted to Children's National Medical Center in Washington, DC on 04/21/16 in order to have a feeding tube inserted into her stomach. A host of tests including MRIs, EEGs, VEEGs, swallowing tests, gastrointestinal tests, sleep studies, as well as genetic testing involving both children will be needed. Further testing based upon the results of these tests may also be necessary. The trips to Rockville and Washington, DC will require extensive traveling for my sister’s family from their home in Carroll County. To compound my sister’s anxiety, the family vehicle is far from reliable and is in need of significant repair to get them back and forth for the specialty care the girls will require.
Alexander’s Disease is a rare neurological disorder that comes with a lot of unknowns. Emma and Julia, as well as my sister, have a long, hard fight ahead of them, and the only treatment is to try and keep those with this disease comfortable and happy.
It is not an easy thing to have to ask for help, but any that can be given to secure reliable transportation for doctor/hospital visits, costs of associated testing, medical care, home care assistance, and home schooling would be greatly appreciated by the White and Dunton families.
My sister’s younger daughter, 8 year old Julia has previously been diagnosed with Epilepsy and has been suffering from significant seizures since the age of 3. Julia will now need to undergo the same testing to determine if she has Alexander’s Disease as well.
The initial diagnosis was made in Rockville, MD but due to Emma' inability to eat the amount of food necessary for growth and survival she was admitted to Children's National Medical Center in Washington, DC on 04/21/16 in order to have a feeding tube inserted into her stomach. A host of tests including MRIs, EEGs, VEEGs, swallowing tests, gastrointestinal tests, sleep studies, as well as genetic testing involving both children will be needed. Further testing based upon the results of these tests may also be necessary. The trips to Rockville and Washington, DC will require extensive traveling for my sister’s family from their home in Carroll County. To compound my sister’s anxiety, the family vehicle is far from reliable and is in need of significant repair to get them back and forth for the specialty care the girls will require.
Alexander’s Disease is a rare neurological disorder that comes with a lot of unknowns. Emma and Julia, as well as my sister, have a long, hard fight ahead of them, and the only treatment is to try and keep those with this disease comfortable and happy.
It is not an easy thing to have to ask for help, but any that can be given to secure reliable transportation for doctor/hospital visits, costs of associated testing, medical care, home care assistance, and home schooling would be greatly appreciated by the White and Dunton families.
Organizer
Eric Dunton
Organizer
Fallston, MD