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Many of you have been asking what to get Aela for her birthday, what does she need and how you can help her in general.
As you all know, Aela is 100% immobile and likely will be her entire life. She was born with a genetic metabolic disorder called PDH Deficiency, which doesn’t allow her body to process carbs and sugar into energy, and all of your cells need energy to live. If you’d like to read more about her condition, click here .
Her road will be a difficult one, and we will both be by her side, her hand in ours.
But to be honest, she has more toys and clothes than we care to admit (garage sale coming right up!) and a few major (and quite expensive) needs coming at us with full force...
1) A handicap bath or shower. When looking for a new home, we were certain to choose one with a floor level bedroom. What we overlooked, however, is a floor level bath. Carrying her upstairs for bath time is becoming more and more difficult, not to mention dangerous. We will soon be needing to change the tiny stand up shower (that her bath chair won’t fit in) to an adaptable bathtub or shower room. During that same time we will also install a lift from her bed to the shower/bath.
2) A wheelchair accessible van. Lifting her into her standard car seat in our car won’t be an option for long. We were fortunate enough for Aela to recently get an adaptive stroller/chair, which has the ability to clip into a wheelchair accessible van floor.
We hesitated to set up a GoFund me, but we wanted a place where friends and family could help Aela over the years along her journey. We will share this link out for every birthday, every Christmas, every occasion where gifts are usually given as an alternative way to truly help Aela. We honestly aren't sure how we plan to pay for all of her needs as she grows, but we do have faith that the Lord will continue to take care of her. Between His love, Tricare and support from family and friends like you I am confident we will be able to get this little love what she needs.
We love you all and we are so appreciative of your love and support for our sweet girl ♥️
As you all know, Aela is 100% immobile and likely will be her entire life. She was born with a genetic metabolic disorder called PDH Deficiency, which doesn’t allow her body to process carbs and sugar into energy, and all of your cells need energy to live. If you’d like to read more about her condition, click here .
Her road will be a difficult one, and we will both be by her side, her hand in ours.
But to be honest, she has more toys and clothes than we care to admit (garage sale coming right up!) and a few major (and quite expensive) needs coming at us with full force...
1) A handicap bath or shower. When looking for a new home, we were certain to choose one with a floor level bedroom. What we overlooked, however, is a floor level bath. Carrying her upstairs for bath time is becoming more and more difficult, not to mention dangerous. We will soon be needing to change the tiny stand up shower (that her bath chair won’t fit in) to an adaptable bathtub or shower room. During that same time we will also install a lift from her bed to the shower/bath.
2) A wheelchair accessible van. Lifting her into her standard car seat in our car won’t be an option for long. We were fortunate enough for Aela to recently get an adaptive stroller/chair, which has the ability to clip into a wheelchair accessible van floor.
We hesitated to set up a GoFund me, but we wanted a place where friends and family could help Aela over the years along her journey. We will share this link out for every birthday, every Christmas, every occasion where gifts are usually given as an alternative way to truly help Aela. We honestly aren't sure how we plan to pay for all of her needs as she grows, but we do have faith that the Lord will continue to take care of her. Between His love, Tricare and support from family and friends like you I am confident we will be able to get this little love what she needs.
We love you all and we are so appreciative of your love and support for our sweet girl ♥️