*PleaseHelpMikaelaGetAVan

Hello, this is Mikaela my 13 year old daughter Mikaela has a rare condition called Rett Syndrome , Rett syndrome is a rare neurological disorder caused by genetic mutations that disrupt brain development, primarily affecting girls                                                 

• • Rett syndrome is a neurodevelopmental disorder, meaning it affects the development of the brain and nervous system. 
     
    Initially, development appears normal, but then affected individuals lose skills and abilities, including speech and motor skills. 
     
    It often leads to a loss of purposeful hand movements, replaced by repetitive hand movements like wringing or washing. 
     
    Other symptoms include difficulty with breathing, gastrointestinal problems, and seizures. 
    Individuals with Rett syndrome may also experience sleep disturbances, irritability, and social isolation. 
    Some may develop scoliosis (curvature of the spine) or have difficulty with chewing and swallowing. Breathing abnormalities, such as hyperventilation or breath-holding, can also occur. Some individuals may experience dystonia, a condition characterized by sustained muscle contractions, leading to abnormal, uncontrolled movements and postures Mikaela doesn’t walk or talked she depends on me for everything despite her condition she was doing pretty good until almost a year ago when her lungs had visibly deteriorating due to her condition and the lack of movement,unfortunately as older she gets as worse she will get because of her lungs been so bad she had to get a tracheostomy and she is connected to a ventilator 24/7, without that she can’t breath,she is now 13 and she is a very big kid for her age right now I pick her up from her bed to her chair and up and down the stairs of our apartment complex , because I can’t work to be with her I cannot afford a home and all I can afford is an apt, we do have a minivan but is to tall and pick her up and get her in the car is becoming very challenging and very dangerous because of her trach also because I have to unplug her from the vent to get her in and she desaturated pretty quickly that is why we need to get her a wheelchair accessible van  unfortunately insurance doesn’t cover van modifications I’m willing to give up ours as a trade in order to get a modified one this is why I’m asking for help to get her a van they are very expensive and because I don’t work I can’t even finance one please please even if you can’t donate please share her story thank you….