Car For Samantha

Samantha was born with a genetic disorder. At first It was thought to be Leigh's Syndrome, but after participating in many genetic studies it was recently found to be a very rare disorder named Congenital Disorder of Glycosylation Type 2N (CDG2N). We were told by her doctor that she was the first in Australia to be diagnosed with this condition and only 10 world wide so far have CDG2N. Samantha's sister, Stephanie passed away 20 years ago with the same problem at the age of 2. Samantha is now 12 years old. Samantha is blessed to have a loving, caring brother who absolutely adores her. There is no cure for her disorder. Everyday gets harder and harder for little Samantha. She can't walk, talk or even hold her self up, the only time we know she is not well is when she stops smiling. She has trouble breathing and has a gastrostomy tube for feeding. She also has scoliosis which can't be operated on as Samantha can't take anymore operations. Every day she needs eight different medications throughout the day. Samantha also requires special formula milk to be given. As Samantha gets older, she is getting heavier. She weighs about 22 kilos at the moment. When we need to go in the car whether it be to the doctors or shops we have to carry Samantha to the car, then struggle to get her in the car seat. There are times when she stiffens up and trying to sit her in the seat is near impossible. We then have to dismantle the wheel chair which weighs about 15 kilos and lift that into the back of the car. We have a simple Car, Toyota Corolla station wagon. There are times as we are carrying Samantha and trying to put her in the car that we bump her head or her floppy arms or legs get caught in the door. The strain and pain on our backs is at times too much. She loves her drives as this is the only time Samantha gets out of the house. She can't attend school so she love her little car trips. Sleep is also difficult for her. We wake anywhere between 4 to 8 times a night clearing her airway to breath. We carry a suction pump to clear her airway cause there are times she stops breathing. It would be great to have a modified car that we can wheel Samantha and her wheelchair straight in. No lifting or struggling. It would make life a lot easier. We don't know how long we have little Samantha for, but for the time we do have her, having that car would make a huge difference.