AEthereal's Plea: Please Help!

Hello, my name is AEthereal.

That's not a typo; my dad picked the first letter of my name to be the Latin Letter Ash, which looks like the letters AE, but they are connected like this Æthereal. I've been making a unique impact on the world since my birth on August 11, 2016. As my parents' only child, I felt loved and blessed from the moment I entered their world. My name means “Celestial Heavenly Wonders,” and I believe I have a special place in the universe. I was born healthy, kicking, stretching, and cooing with big yawns and a healthy appetite.

Then, in a split second, everything changed about my idyllic life. As I was snuggling comfortably into my mother’s warm embrace, I felt my brain crash, and my body went limp. My heart stopped. My mother’s soothing lullaby turned into blood-curdling screams for my father while she performed CPR. My heart started beating. I came back, only to be whisked away by strange people in white coats.

After a devastating diagnosis, my parents brought me home, where I was once again surrounded by their unconditional love. My beloved grandfather moved in to provide 24/7 care, as I am medically fragile and need around-the-clock, awake care. Life-threatening seizures and complications can occur at any time, day or night.

I am now eight, and my life is still filled with the magic of love, music, and a soothing environment. Yet, I cannot walk, talk, or feed myself. This past May, after more tests, my parents were faced with the reality that my life had become more fragile. They were told that when I leave this world, it will most likely be due to complications brought on by repetitive seizures.

As I grow, it is both good news and bad. It's good that I have become big and strong, but bad because my seizures are not just a danger to me, but also to my loving caregivers. Last month, my Grandpa sustained a permanent injury when his bicep muscle and tendon tore and ruptured, making it impossible for him to lift me without incurring a high risk of injury.

Through all of their hardship, I never doubt that I am adored, as my parents take it all in stride and always make me feel special, but more and more I see the desparation on their faces. They never make me feel as if I am a burden. But still, I want to make sure that I am not, and I know if they had additional caregivers, we could enjoy the time I have left with much less stress and exhaustion. As less exhuastion enables my parents and grandpa take time to play and make me laugh.

My mother is trying to go back to work so that they can continue to have income and jobs after I am gone. This puts us in even greater need for financial help, more caregivers, and additional resources as I keep growing.

Please help me to help my parents be less exhausted, and please pray for my Grandpa’s arm to miraculously heal.

Thank you, and may God bless you.

Love,

Æthereal

Hi, I am Jeannie Seeley-Smith, Æthereal’s GoFundMe coordinator and neighbor.

Adorable Æthereal, her parents, Genavive, Andrew, and Jack, her grandfather, are an extraordinary family that moved in next door four years ago. Despite AEthereal’s broken mind and body, she radiates a heavenly spirit. From the beginning of meeting them, my heart goes out to them.

With the tragic injury to Jack’s arm, additional caregivers are needed as AEthereal’s care is complex, and extraordinarily demanding for one caregiver at a time. She needs much more help to cover every minute of every day. Genavive and Andrew always portray a positive spirit, but something has changed. I feel their panic.

The need for help isn't just looming; it's here. Jack’s injury has thrown the family into major turmoil. They urgently need funds, freeing Andrew and Genavive to have time to get a second wind in order to get through their long nights. This family is too precious to let them fall. Please join me in holding them up. What lies ahead is unthinkable but to know others care about them, can carry them through.

Thank you from the depths of my heart, may God bless you!

In sincere gratfullness,

Jeannie