Princess Sophia

Princess Sophia
My name is Sophia Grace Crawford and I am one year old. I have been diagnosed with Batten Disease, a rare and incurable genetic disease that will cause me to lose the little sight that I have, worsening seizures, loss of the ability to move my arms and legs, and will ultimately leave me bed ridden. And it is always fatal. I will leave this world within the next two years but I don't know exactly when. Until then, my Mommy and Daddy want to help me bring awareness to Batten Disease. Please come on this journey with me so that, together, we can celebrate each day that I have left!

A Bucket List? I need YOUR help!

So my mommy was talking to my daddy about this little girl named Avery. Maybe you have heard of her? From what I heard my mom say, this little girl named Avery was very sick like me....well, not exactly like me. I have Batten Disease and she had Spinal Muscular Atrophy. But either way, we are both sick little girls that are just precious (my mommy's words). Mommy read Avery's website and cried through the whole thing! She didn't share all of it with me but she did tell me that Avery's mommy and daddy wanted to do lots of things with Avery before she died, just like my mommy and daddy wants to do with me. Mommy said that she always knew in her mind about things she wanted to do with me but now she thinks its important to write it all down so we don't forget anything. Maybe we can do them all and maybe we can't. But mommy said we will try and that's the most important thing!
So, if you can help me think of things to put on my "Bucket List", or if you can help me complete them, please do! And I love hearing all the comments that mommy reads to me each night so keep 'em coming....they brighten our day. And did you know that people in Canada, Germany, and Romania are looking at my page too? That's so cool---please keep sharing and passing my website to everyone you know! And don't forget to help with my Bucket List by adding comments and suggestions in the comment section below my list---thanks world! :)

Bucket List
Lay in the grass
Sit on a blanket in the backyard with my mommy
Go swimming in an outside pool
Slide down a slide at the playground 
Swing on the swingset
Go on a family vacation
Have my nails painted
Feel sand between my toes
Go on a boat ride
Feel the ocean waves
Go swimming in a heated pool
Eat a cupcake
Have a 1st birthday party
Get a family portrait
Ride on my daddy's motorcycle
Sleep in my own crib
Spend a day at the yardsales
Take a nap in my playpen outside
Make a footprint plaque for my bedroom
Stop needing my g-tube
Put gel in my hair
Wear earring (okay so they were stickers, but it counts)
Get my hair cut at the salon
Have my picture made with Santa Claus
Jump on a bouncer
Ride on a golf cart
Carve a pumpkin
Go trick or treating
First day of school
Go on a hay ride
Go to a petting zoo
Color Easter Eggs
Go dancing
Go to Disney World
Meet another baby like me
Get a button for my PEG tube
Get a better chair so I can go around the house with mommy
Get a manicure
Play dress up
Play with other kids
Have a tea party
Put my hands in PlayDoh
Be in a parade
Be on television
Ride on a bicycle
Jump on a trampoline
Sit up on my own
Drink from a sippy cup
Sit in a high chair
Go to college
Kiss a boy
Get my heart broken
Break hearts
Ride the school bus
Help mommy pack my school lunch
Bake cookies
Decorate the Christmas tree
Watch reality TV with my mommy
Watch Ohio State lose football games with daddy (oops, sorry daddy--I meant WIN)
Go to college
Ride a tricycle
Jump
Play in the sprinklers
Crawl
Pull myself up by using the coffee table
Hug my dog Peanut
Help mommy fold towels
Have daddy teach me how to change brake pads on my car
Get a car
Get my drivers license
Go to prom
Get married
Have a boy ask my daddy to marry me
Have a baby of my own
Get a little brother or sister
Have a painting done of me
Get popcorn at the movies
Drink sweet tea with my daddy
Have morning coffee with my G-Ma
Go fishing with my papoo
Ride in papaw's cop car
Look at pictures of my mommy and daddy when they were little
Laugh at pictures of my mommy and daddy when they were little
Play cards with my Uncle Dave and Uncle Tarvis
Learn to cook with my Aunt Tracy
Eat the best food in the world (Mamaw Dana's!)
Tear open Christmas presents
Spend the weekend at my Aunt K's
Hold up my head up on my own
Swing on the front porch
Help Mommy plan my bridal shower
Have a baby shower for myself
Be a bridesmaid
Ride a horse
Play in the snow
Dance in the rain






 





15 comments:

  1. Thanks Kathy for your suggestion of 'pic with Santa'. I have added it to the list!

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  2. Take a ride in Mamaw and Grandaddy's golf cart. If she hasn't already. I think every kid in the family has done it at some point. And maybe go on a hayride.

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    Replies
    1. I loved doing this when I was a kid but I hadn't thought about it for Sophia--thanks Kathy!

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    2. Seriously... we were ALWAYS in that thing! I think Sophia needs to feel the wind in her hair. :0)

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  3. Hey Jaime! I'm planning a trip to Lexington while I'm home (9/20-10/29), and I'd love to help cross something off Sophia's Bucket List! I don't have anything to add to the list right now, but I'll put on my thinking cap and get back with you. xoxo

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    1. That sounds great. Look forward to seeing you!

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  4. Let's add these.

    Go trick or treating
    Color Easter eggs
    Watch fireworks

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  5. Valentines day
    Pony ride
    Pumpkin patch
    Hay ride
    Weenie roast
    _
    Disney world? Every little girls dream to be a princess!

    Love and prayers,

    Ashley Morris Minton

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  6. Great ideas! Will definitely plan for these!

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  7. How about:
    Visit a petting zoo
    First ice cream cone
    First puppy's kiss
    Walk in the woods

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  8. I love getting these ideas from all of you! Things I would never have thought of! Thanks and keep 'em coming!!

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  9. Carving a pumpkin and feeling the pulp between your fingers (Madison & Mackenzie are gonna help Sophia cross this one off the list this weekend!) I'll post pics! :)

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  10. Please let us know if there are specific things that you need help with in order to help Sophia cross some of these items off. I know that there are lots of us who would love to help Sophia get to do some of these things. Don't hesitate to throw it out there anytime you think of something you need.

    Crystal Shadd

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  11. How about trying a lemon and catching the sour face on camera?

    Also, I am viewing you from Northern Italy!!

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