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HELP Aurelia get a handicap accessible vehicle

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My name is Sarah Pruitt I am the mother of a very special, beautiful, one of a kind four year old toddler named Aurelia. Recently Aurelia was diagnosed with Metachromatic Leukodystrophy (MLD). A terminal illness that still has NO CURE.                 Aurelia  lacks an enzyme in her body, without this enzyme her nervous system can not function leading to a breakdown in the communication between her nerves and her brain. Doctors say Aurelia will have seizures, paralysis, blindness, dementia, and inevitability Aurelia will loose her life to this disease . The only hope to keep her living  longer is to have a bonemarrow transplant . She will also be the 1st ever human to have a special O-cell trail that will go along with her transplant . This trail with hope will one day lead to a CURE Aurelia is 2 years post transplant it was so very hard to watch her go through chemo and loose her hair to seeing her suffer from all the side affect of the medications they had to give her . It was so hard seeing  her catch every viruses and bacteria which made her very very sick . Someday's I though I was loosing my baby she was so close to death I would lay my head on her bed and cry begging someone to help her ,heal her ,save her please I can't live without her. This past year Aurelia has had way more downs then ups she has been fighting so hard everyday to keep this disease from taking everything from her .She's been very sick and each day is different some days she's a normal happy 4 year old but most days she 's so sick she won't and can't  even get out of bed . We live moment by moment day by day minute by minute  We have made it back home to  (Florida) after living a year in NC where Aurelia was transplanted. Now we have therapy 5 days a week because during the transplant process she's lost her ability to walk , run and do anything on her own. We also have to drive to Orlando 2 or 3 times a week so Aurelia can we be watched very closely . Aurelia is still immune suppressed and can't be a normal 4 year old she's not aloud in school . Aurelia can't even play with children without running the risk of getting sick because what might be just a cold to normal health people could be death for Aurelia . She can't be around big crowds . She not aloud in the sun or heat for long periods of time so taking her out at night is our only option . As her mother I do everything for Aurelia . She no longer lives a normal life she can't just be a happy 4 year old going to school or just running and playing out side . Her life is consumed with doctors , nurses , and lots of medical appointments everyday It's very hard to explain children with special needs they need equipment and medication that is not always covered buy insurance Aurelia is also 100% disabled an physical needs help to do everything Aurelia is also in a wheel chair which she is UNABLE to use because I don’t have a wheel chair or handicap accessible vehicle so I’m unable to transport her and her wheel chair around . I’m in desperate need of a vehicle for her wheel chair . Your donations will help me get Aurelia everything she NEEDS its very hard to afford most things when I am unable to work .Aurelia needs 24 hour care and supervision . Some days I wonder if we are going to make it. Are we going to be able to pay our bills or get Aurelia the mediation she needs . I'm asking for HELP from your family to mine . Open your heart and help my little girl Aurelia she needs someone fighting with her and for her .I wish you could meet Aurelia .She lights up a room with her smile and laughter. She touches everyones souls the moment they meet her. Aurelia she a little girl who just wants to live and do everything a child her age should be doing . We need your help to save Aurelia and give her the care she needs. I beg you, please help my baby live one more day , one more hour anything .Please help us spread the word about this cruel disease and force the world to find a cure. Not just for Aurelia but for innocent children all over the world.  Bless you and your family. Please keep Aurelia in your thoughts and HELP ME RAISE MONEY FOR HER she needs to feel normal and she’s can’t feel like a 6 year old child when she can’t use her wheel chair in stores or school or the park . She needs independence . An freedom to go around on her own . Thank you for all your help .....

Organizer

Aurelia Onley
Organizer
St. Petersburg, FL

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