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Ellie's Long Term Care Fund

$220 of $50,000 goal

Raised by 4 people in 46 months
Ellie's Story

Our daughter Ellie was born 17 weeks early... yes.. that’s right you heard me correctly..
almost 4 months early.. at 1 lb 3 oz. and 11 inches long.

Thanks to the heroic efforts of the NICU staff and by the grace of God, Ellie was able to fight and overcome the tremendous challenges of blood born yeast infections, multiple surgical procedures and the stress of intubation over the course of her 5 month stay with
the people at the NICU.

When Ellie finally came home she was on medical monitors and 100% oxygen for another year.
As she grew it became clear she was facing several additional challenges.

First, due in part to the effects of intubation and 100% oxygen and the need for eye surgery while in the hospital and has heavy vision problems. They call it Retinopathy of prematurity.

While she can understand everything that is said to her and she was, for a time able to talk to us and tell us what she wanted, needed and how she felt it was always difficult for her to communicate and these days is no longer capable of talking as she was once able to.

While she was able to stand her legs were crossed as the Cerebral Palsy began to take hold of her muscles.
This condition led to growth problems that began to endanger the development of her internal organs and required surgery to correct the problems.

She got very sick from post-surgical infections and we almost lost her. Once again, but for the grace of God and
to the doctor's surprise and amazement she survived and 3 years later they removed the hardware used to help her recover from the procedures.

It was determined that she has a lack of myelin, a protective substance that coats the nerves in the brain acting as insolation much like wiring insolation in electrical equipment and that the condition may over time be progressive, regressive or stable but that there was no way to treat this.

As a result of all this she is wheel chair bound and totally dependent on us.
Despite all this, she is a very sweet girl, funny, intelligent, happy and as you can see attractive girl and as she has gotten older and thankfully, heavier.. we of course have not gotten younger nor stronger, as a result and as time goes on it is becoming very challenging to care for her and keep her safe.
A challenge that we step up to every day. A challenge that I dare say most are not up to and sometimes it saddens me when I see the parents of able bodied kids at the store being taken for granted.

And while as her parents, Ellie's care is our responsibility the reality of all this is that one way or another there will come a day where we will not be able to meet these challenges anymore and again as her parents it is our responsibility to ensure her long term care will continue.
I am in the process of estate planning and other arrangements however, while I do well enough to provide for the day to day needs of the family (thank god... we have had some struggles) I... we have come to realize that I won’t be able to fund a long term plan for Ellie given the time I have left before retirement..
chuckles.. like that will ever happen.. even if we were to save every penny I made between now and then it would not be sufficient to fund the trust. That is why I decided to post this and start our go fund me campaign to fund a trust for Ellie's long term care.
Thank you for your support and listening to Ellie's story. She has a lot to look forward to as research and technology enable her to do and be more.
We are optimistic that the lord will provide and I hope you will find it in your hearts by the grace of God to help us fund a long and happy life for Ellie.

Thank you and God bless.

Mech Smit
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Ellie starts high school next week! I can not believe it.. where has the time gone!
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UPDATE!
Well, unfortunately Ellie's grandpa passed away a few months ago now which we are very sad about. We love and miss him dearly. However, grandpa had a van that he gave us so that we can drive Ellie around to her appointments. While it is not set up for wheel chair access it can be fitted for a ramp which we are are researching now. I can also fit it for several straps to use as tie downs and such. So for now we have a solution for the transportation but we are still trying to raise money for long term funding of her care.
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We decided to look at this in smaller chunks.. first things first.. a wheel chair accessible van so that mom can take her to the doctor without having to transfer from chair to car seat and back. Statistically one of the most dangerous times in a disabled persons life is during transfers from chair to chair in our out of the house.
Such vans run about 50k... hope you can help.
God bless and thanks
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Hi, my name is Ellie, I'm 15 years old and I have cerebral palsy.
I was born 17 weeks early at 1 lb 3oz. and spent 5 months in the hospital getting ready to come home to my mom and dad.
When I came home mom and dad made the decision that my mom would have to stop working to take care of me so my dad has been running a single family income ever since.
He makes enough to keep me warm, dry and fed... he calls it the proper care and feeding of a boo ba.. my nick name.. giggles... but I need a wheel chair accessible car or van. something that my mom can safely take me to my doctor appointments without having to have dad take the day off from work to take us to the doctor.
Dad's commuting car just died too so he needs to spend money on another used car as well, not to mention all the equipment I need for them to take care of me.
Mom and dad love me very much and do everything they can to help me live as normal a life as I can.
Dad says it’s important that I have as normal a life as I can while he and mom are still able to take care of me because there will come a day when they won’t be able too anymore.
He and mom are planning for that day but funding my care for the rest of my life and hopefully something of a retirement is a daunting challenge for dad and he does not think he will ever really be able to retire, not that he minds... like I said he loves me very much and will do what he has to.
If you can find it in your hearts to help us we would really appreciate it.

Thanks

Ellie
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$220 of $50,000 goal

Raised by 4 people in 46 months
Created February 6, 2015
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