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$2,610 of $5,000
52%
59 donations

This fundraiser ended on 02/01/13

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The family of Olivia are uniting to raise money to help purchase the medical equipment she needs to have a better quality of life.

Olivia was about six months old when she began to slowly lose all of her previously acquired skills. Her head began to slowly tilt to one side because she was unable to hold it up anymore; she could not sit up on her own anymore, or reach to play with her toys. She became very irritable and seemed to be in pain all the time. After several doctors’ appointments, not one could tell what was wrong with her. A brain scan performed and it revealed that parts of her brain had calcified, meaning that they basically turned to bone. What could have caused this to happen? After being referred to a geneticist, there were still no answers. After over a year of no answers, Olivia was finally diagnosed. She has a rare genetic disease called Aicardi-Goutieres Syndrome. It is a progressive disease, meaning that it will continue to get worse as time goes on.You can find out more information here :http://ghr.nlm.nih.gov/condition/aicardi-goutieres-syndrome

Luckily for us, after her initial brain trauma no other parts of her brain have been affected. She has significant neuromuscular problems including muscle stiffness (spasticity); involuntary tensing of various muscles (dystonia), and weak muscle tone (hypotonia) in the trunk as well as seizures. Olivia cannot sit, walk, stand, control her own body or talk. She is on several medications to manage her symptoms. She recently had to have surgery to have a feeding tube placed as she has swallowing difficulties and has aspirated on her food which led her to be hospitalized with a life threatening pneumonia.  Olivia is a beautiful 8 year old girl, who is full of life and loves to laugh and smile. She can even talk using a special computer that uses her eyes to register the word she wants. There is no life expectancy associated with this disease as the oldest person with the disease is only in their teens. We do not know how much time we have with Olivia and want to be able to give her anything she needs.

As you can understand, a syndrome like this is very costly. She needs a lot of specialized equipment that is very expensive as well as help with her medical bills.  Any donation will help us be able to provide Olivia with the equipment she needs to be able to live her life to the fullest.

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