Ava Rae Rose Medical Fund
Donation protected
This is my Ava Rae. She is the strongest, bravest, most courageous little girl I know. She has suffered from seizures since she was 6 months old and is now 2.5 years old.
She is currently diagnosed with inretractable (hard to control) seizures and a carnatine deficiency.
We are in the process of trying to rule out Adrenoleukodystrophy (ALD). This progressive disease does not have a good prognosis unless it is diagnosed early and treated with a bone marrow transplant and stem cell therapy.( A good reference is the movie "Lorenzo's Oil" in which the little boy suffered from ALD. She needs genetic testing, our insurance is yet to approve it. All other conventional tests points to her having the disease.
We also may be looking at traveling to Baltimore for treatment and possibly $400 per month if we decide to pursue Lorenzo's Oil as a treatment (it is considered "experimental" and insurance won't cover it).
I am a single mom who has been unable to work due to her frequent hospitalizations and the inability to have her in a group setting for daycare for fear of her catching something and having a Status Epilepticus Seizure ( life-threatening, and she has had 3). I don't like to ask for help, but I have no choice I need help.
Any money that is not used directly for her medical care, will be used to make her and ONLY HER life more comfortable.
God Bless You!
Cassie and Ava
Organizer
Cassie Alegria
Organizer
Tucson, AZ