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Ellie's Long Term Care Fund

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

Organizer

Mech Smit
Organizer
Neabsco, VA

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