Julia Lindenmuth is our amazing 12-year-old daughter. https://www.facebook.com/julia.lindenmuth
Julia has a predicted shortened life expectancy. Girls with Aicardi Syndrome typically do not live past the age of 2. If they do survive that 2-year mark, they are not expected to live into adulthood. There are some cases that have surpassed that expectation. Julia is one of the more severe cases.
Our mantra: Quality of Life over Quantity of Life.
We have done our best to make the most of every day. This means spending quality time: reading to her, holding her, talking to her, taking her for wheelchair "walks" through the park, taking her into a pool whenever the opportunity presents itself and so on.
Julia's predicted shortened lifespan is just that: a prediction!
Miracles happen every day. Julia is testament of that!
However, the thought of "What if?", it is a feeling you cannot shake, it lingers…
Will we be lucky enough to get 7 more years, 5 years, 3 years with our baby?
The feeling leaves you scrambling, thinking: What else can we do?
There are things that can give her a better quality of life that we simply cannot afford. The biggest reason we have to ask for your help is because our out of pocket yearly deductible (not including monthly premiums) is over $14,000.oo. Unfortunately, we always meet our out of pocket deductible.
If you would like to help us fulfill this dream, we greatly appreciate any support.
Below are some examples of what your support would provide:
Help to continue paying for an FDA Approved CBD Oil (expensive but extremely effective for reducing Julia's seizures) A bottle of 100ml is $275.00
￼A membership to the JCC to take Julia swimming as frequently as we can. Julia gets sick very easily, she cannot go to school because she ends up in the hospital from a simple cold turned aspiration pneumonia. We could go to the YMCA which w
ould be more cost effective, but there are so many people there that it would not be worth the risk of hospitalization. The JCC pool is warm enough to not shock her, we go during the slowest times, and Julia is free to move her arms and legs without gravity pulling her down. She smiles, being in the water is clearly her favorite activity.
A customized wheelchair to protect her arms and legs during seizures. Julia often has bruises from hitting or kicking the sides of her wheelchair, and I'm fearful she will eventually really hurt herself. We have tried all sorts of padding which makes getting through doorways impossible, swim noodles, which make tilting or reclining adjustments impossible. I found one wheelchair that I believe is the answer. To my knowledge it is not sold in the US. (More research needs to be done on how to acquire this and what the price would be.)
At this time, I am not sure what our goal will be but I am listing our goal as $25,000.00 until I have pricing on the wheelchair.
Food for thought: Prior to Julia, if I were asked how much I thought a pediatric wheelchair could cost, (after you add in medically necessary accessories), I would have guessed $500.oo. However, after medically necessary accessories Julia’s current wheelchair was over $16,000.oo. Thankfully, this was covered by insurance. To date I cannot find a wheelchair sold in the United States that will keep her safe - meaning insurance is not going to cover it.
Thank you in advance for your consideration!
A little background if you do not know Julia:
Julia was born with Aicardi Syndrome, meaning she has: Complete Agenesis of the corpus callosum – (missing the middle part of the brain), Chorioretinal lacunae – (lesions or loss of pigment on both eyes), and Intractable Seizures – (Julia’s seizures can last anywhere from a few seconds to several hours). Julia has a host of other diagnoses as well. To boil it down, Julia has a long list of struggles. She is non-verbal, (cannot talk) non-ambulatory (cannot walk), needs full support to sit, she is fed by a g-tube, (she cannot eat anything by mouth: imagine never tasting ice cream) developmental delays etc. We believe Julia's development ranges between 6 to 12 months of age. She is light of our lives.