Hello! My name is Salome, but my parents often call me "Sunshine". I guess they do so because, even though I am not able to use my arms, legs, and muscles properly, I always have a smile on my face. I am nine years old and I am a happy and curious girl.
Somehow, though, day-to-day tasks are much more complicated for me due to my severe handicap. I cannot stand, walk, or sit on my own. My muscles are very weak and I cannot control my legs or arms in a proper way. I often have uncontrollable and spontaneous convulsions which make it quite difficult to carry me from one place to another. My mum, dad, and others must help me in all aspects and must watch over me constantly due to my therapy-resistant epilepsy. The doctors have no name for my sickness and they have never found its cause.
Officially, I am 100% handicapped and am categorized in the highest German care level possible. Mentally, I am able to do a lot of things though -- I can see and hear normally and I comprehend things being said to me. Since I am not able to speak, I use an eye-controlled computer, which helps me to express myself.
I live with my brother, sister, and my parents near the city of Giessen in the State of Hessen in Germany. Despite my handicap I love to be among other children and adults and want to participate in all kind of events. This is not easy due to my handicap. My mother is often concerned about the future. She organizes everything at home for me, but she also must have time for my younger brother and sister. My dad is often abroad for work and must earn money for the entire family alone. My parents took the risk and borrowed lots of money from the bank in order to build a house designed especially for my needs.
I now need a customized vehicle with extra features for driving me around with my family - this is most important for me. This van must be able to lift my wheelchair into the interior and also to be able to secure it properly according to the safety restrictions. This customized van will cost lots of money. We already got help from a lot of nice people, organizations, and foundations some time ago, so we were able to afford such a customized van. Unfortunately, though, this didn't turn out well. We were given bad advice - the company in charge of retrofitting the van for my needs told us to purchase a short-version van. Although my mother had tested lots of vans beforehand, we really hadn't realized that a short-version van wouldn't suit my needs in everyday life as it simply has too little space for all my needs.
I will also need a bigger wheelchair, which will make it even more complicated because we will then have to remove seats from the van. In this case we are not able to travel as a family. We could sell our existing van and to buy a long-version van, but this one would then have to be customized according to my needs as well. The cost for extra safefy belts and the lift, which helps me to sit in the middle of the van next to a careperson (my seizures can occur at any time), is €15,000.
I would appreciate any kind of donation which would help me to drive with my family - with a smile.