Lillie was hospitalized in the PICU for bilateral pneumonia and chronic respiratory disease which ended in a tracheostomy surgery.
As you can imagine, her needs have now shifted astronomically and I am doing my best to update this page. Some information may be from the past, but the campaign for her will be shared to aide in the same goal: to improve her quality of life. Below is a decription of what we have focused on in the past, but her needs are changing everyday. Any help would be distributed amongst those needs accordingly.
In the past we have raised money for several different items. A wheelchair accessible van is our newest, most expensive goal and it wouldn't be possible without a lot of help from our family and friends. Not only would this predominately benefit our sweet Lillie by easing transfer and travel to and from school, multiple doctor appointments and therapies, in the wake of the tracheostomy it would make it SAFER for her to be transported. Safety is imperative.
Lillie has rett syndrome, a severe neurological-developmental disorder. She cannot walk or talk, has virtually no use of her hands and has to be fed through a tube in her stomach. She is completely dependent on others for all tasks of daily living. Due to her challenges, Lillie's body is currently being wracked with sudden neurological disturbances, tonic seizures, various illnesses, unknown movement disorder and chronic respiratory disease. These challenges only increased after she was admitted to the children's hospital PICU in July of 2014 for uncontrollable seizure activity, went into respiratory distress and had to be recussitated five times. She developed pneumonia and a hiatal hernia which required arisky and extensive surgery. She was admitted to the PICU again on August 11th 2015 due to chronic respiratory disease and bilateral pneumonia and now breathes through a tracheostomy.
Her needs are astronomical. The recent decline in her physical state has got us wondering, "Are we doing enough?" We are confined by strained family finances and what our insurance will cover. Unfortunatly, this isn’t always enough. There is specialty equipment, treatments and therapies that can make Lillie's journey with Rett syndrome much easier and also give her the opportunity to have some normalcy in her life. This is where the generosity of others comes into play. If you can help in any way, Lillie and our family would be eternally grateful. We strive to do our very best for our girl, we work hard because she always perseveres. Oh, how we wish our love would be enough! It is immensely painful when resources are there, but just out of reach. Please aid in our efforts to adequately maintain the health and happiness of our sweet baby girl. It is impossible to put a price on your child's well being. It is even more impossible to repay the kind friends and family that reside in our lives. We are eternally grateful for your support!
Below are a few examples of how we have used Lillie's medical fund in the past. Please be advised that this may change as her needs change and as we are informed of new equipment to make her more conformable.
*Wheelchair accessible van, which is our greatest expense.
*offset the cost of long-term hospitalization, missed work, extra food expenses and gas to/from the hospital.
*specific positioning chairs, etc for ultimate comfort.
*additional therapies that insurance doesn't cover.
*To better communicate via her tobii eye gaze computer. We need training that is Rett specific in order to best teach ourselves and others.
*Other medical expenses include, but are not limited to, frequent appointment travel expenses, therapies that are not paid for by insurance and so much more.
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