Fuller, Stevi Rae

October 9, 1989 - May 22, 2006

Stevi Rae FullerGroesbeck, Texas

We say good bye to Stevi Rae Fuller.

Stevi Fuller was born Oct. 9, 1989, full of love and smiles and a fight to live life to its fullest. Through the years she brought us together in ways we had never known. We got past ourselves and into her world.

When she was 1, we knew something was wrong because of delayed development in her speech and walking. Years of going to the doctors and being tested still showed nothing except frustration. Through it all, she showed us more love than we had ever known.

Finally, in May 1999, she was diagnosed with HSS, now NBIA, and lost her ability to swallow and had to have a gastric tube placed. Her life would never be the same. Stress and dystonia went wild in her body.

In 2000, she bit off one-third of her tongue and got pneumonia. The doctors prepared us for her death, but God graced us with six more years. In 2001 she had deep brain stimulation, which helped her regain some of her ability to function.

She taught us lessons of going through trials and tribulations with peace in our hearts. She taught us endurance, perseverance and courage. Taking care of Stevi was the most challenging thing our family has ever done, but we received the greatest rewards! Sacrifice was the key.

She died May 22, 2006, from pneumonia and we gave her a Celebration of Life Party. A poem was written and read by her physical therapist and at the end of the service, we released helium balloons and live butterflies. We will forever remember the lessons of life taught by our precious little girl — to love unconditionally and worship the Lord always.

- The Fuller Family — Mom, Dad, Sister Amy and her family Wesley, Traci and Tyler and Grandma Ruth


The Sound of Flutter

One day as she was lying there
She heard a flutter in the air.
She listened close as it passed by.
She knew it was a butterfly.

And then, again, she heard the sound.
Her butterflies were all around!
They danced in colored harmony.
Oh what a sight for her to see!

With wondrous eyes she watched them fly
And touched their wings as they flew by
She giggled with a joyful glee
And said to them, “Please wait for me!”

Then in the midst of colored wings
She heard the angels start to sing
To her delight, the Son of Man
Reached out to take her tiny hand.

He gently placed her on His knee
She smiled, with curiosity.
Then He revealed what she had known
The time had come to take her home

“You’ve taught the lessons asked of you
And great rewards are now your due.”
The sound of flutter filled the air
Then she saw Mama crying there

She looked at Jesus with a tear
“Just talk to her, child, she will hear.”
“Oh precious Mama, hear my voice,
And know you were the bestest choice

For Mama I want you to see
That God chose you to care for me.
He knew that you would be the best
And Mama, you have passed the test.

And Daddy, how I loved to hear
Your gentle whispers in my ear
And sweetest Daddy, don’t you cry,
I’m with our Father in the sky.

The lessons that I learned from you
Compassion and a heart that’s true.
And patience you have really shown
A lack of love, I’ve never known.

Then Jesus took her by the hand
And said, “Sweet servant, understand
I only choose my strongest saints,
The ones that I know will not faint,

To show my children here on earth
That their possessions have no worth
Through all your pain and suffering
Faith, Hope and Love… Your offering.”

Then Stevi knew her job was done
And bowed before the Holy One
“Your family will join you one day,
But for now Stevi, let’s go play.”

“So cry for me, but not for long.
For in my heart I have a song
I’m dancing high up in the skies
And chasing all my butterflies.”

(written especially for my precious little friend, Stevi Fuller, by Haila Mahan 5/23/06)



2021 Memorial Tribute


nbia alliance logo1NBIA Cure logoRare Disease Day PartnerRare ConnectTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes

Disclaimer    |     Privacy Policy    |     Financials    |     Contact Us

Give While You Shop!

Igive.comAmazon Smile logo