Sunday Update

Mayafly's Journey



I GET UP.
I WALK.
I FALL DOWN.
MEANWHILE, I KEEP DANCING.
-millel



Life is not
measured by the number of breaths we take, but by
the moments that take our breath away.
Unknown



Stop telling God how big your storm is--Instead tell your storm how big God is.
-Unknown






My name is Maya. I was placed in my Mama's heart in August 2000 and placed in her arms March 2001. I grew in her heart just as all children do. I LIVE with several issues and have lots of tubies including a G-tube in my stomach for venting, a J-tube in my small intestine for medication and venting and a central line (Broviac) that allows me to get medication and nutrition (TPN) through a large vein in my chest, and I also have a vesicostomy so I can use a catheter through a stoma (hole) in my belly. I have a lot of "diagnosis", but it is thought they are part of a channelopathy and mitochondrial cytopathy-a disease affecting the mitochondria necessary for the function of all organ systems and for providing energy to the cells-Some issues I have are autonomic and small fiber neuropathies, seizures, dysmotility, and CVID which is an immune problem so I get IVIG infusions every two weeks. I also have autoimmune issues and need blood transfusions fairly frequently. None of this makes me who I am. I am Maya....I love to play, I love to laugh, and I LOVE TO FLY!!! I never met a person I couldn't make SMILE!



Please take a minute to sign our guestbook, Maya loves to hear from her friends. And thanks for joining us on our journey.





Thanks Helen for Maya's Banner!








NEW PHOTOS ADDED 5/24/09



Thanks Hugs and Hope Members for continuing to brighten Maya's Days!

Hugs and Hope







MAYA LOVES BUTTERFLIES




Mayafly......




Martina Mcbride - She's A Butterfly

She remembers when she first got her wings
And how she opened up the day she learned to sing
Then the colors came, erased the black and white
And her whole world changed when she realized

She's a butterfly, pretty as the crimson sky
Nothing's ever gonna bring her down
And everywhere she goes
Everybody knows she's so glad to be alive
She's a butterfly

Like the purest light in a darkened world
So much hope inside such a lovely girl
You should see her fly, it's almost magical
It makes you wanna cry, she's so beautiful

She's a butterfly, pretty as the crimson sky
Nothing's ever gonna bring her down
And everywhere she goes
Everybody knows she's so glad to be alive
She's a butterfly

God bless the butterfly
Give her the strength to fly
Never let her wings touch the ground
God bless the butterfly
Give her the strength to fly
Never let her wings touch the ground

Oh, she's a butterfly, pretty as the crimson sky
Nothin's ever gonna bring her down
And everywhere she goes
Everybody knows she's so glad to be alive
She's a butterfly
She's a butterfly
She's a butterfly






Searching for a Fairy




A few people who know Maya set up a Special Needs Trust to help out with Maya's expenses. If you are interested, the address is:
Maya M. Owens Special Needs Trust, 137 Deerfield Circle, Bryan, OH 43506.
*All donations will go directly to Maya's needs has as they arise.

E-mail Author: mom2maya@centurytel.net

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 215135 times.

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.