Thursday, March 27
Hey friends! I want you to meet one of the most adorable little girls on the planet. Charlie is the little cutie in the bottom left of that sweet photo!
I went to high school (and elementary school too!) with her beautiful momma, Katie. Today we have a little opportunity to help them out! Charlie was born with hydranencephaly. If you've never heard of hydranencephaly, you can learn about it here. Because of Mobility Awareness Month, they have the opportunity to possibly get a van that would be able to fit Charlie's wheel chair and would open up several opportunities for them.
Here is their story:
Our beautiful daughter Charlie was born with Hydranencephaly, a rare condition in which 80-85 percent of the cerebral hemispheres in her brain are missing, it is a grim prognosis. When she was diagnosed, we were told that what makes a person human is absent in her, we were also told that she absolutely would not see her first birthday. Charlie will be four in August and is as stubborn as they come. Because of her primary diagnosis she also has Cerebral Palsy, Diabetes Insipidus, Blindess and is unable to do many seemingly simple tasks such as sitting up on her own, walking, speaking or maintaining head control for any great length of time.
Because of her prognosis and many daily needs her father and I decided it would be in her best interest if I were to stay home with her while he works. I am so grateful to be able to spend this time with my beautiful girl because every moment with her is so precious and I know that I won’t get it back. Unfortunately, because we only have one income, we only have one vehicle which her father needs to get back and forth from work. This makes it difficult to coordinate appointments and to arrange for transportation especially when traveling to Boston. When we can use our vehicle, our car is too small for her wheelchair which means I usually need to carry her everywhere. Needless to say, at forty pounds, Charlie is no longer easy to carry especially when I have to haul her fifteen pound diaper bag as well! Within a very short period of time, Charlie will no longer fit in a safe and appropriate car seat, making transporting her seemingly impossible.
We would so greatly appreciate any mode of safe transportation in order to provide Charlie with the best care, quality and longest life possible. It would mean so much more to us than simply making our life more convenient, it would open up much greater possibilities for our beautiful little girl.
If you can spare just two minutes (seriously, I did it, it only takes 2 minutes!), can you vote for them here? You can vote every 24 hours (until May 9th) if you're so inclined! Also, if you click the "answer a question" button, you'll be qualified for two votes if you get the mobility-related question correct.
I would take it very personally (in a good way!) if all my good blogging friends could take the time to do this (you know who you are!)
Thanks so much for stopping by and listening. Don't forget to vote!
And if you can't spare two minutes right now, share the link!