Local Newspaper....

Oh Soybean is a celebrity...lol! you can view the story at: http://www.timesgazette.com then type Sawyer Young in the search engine.

6/6/2008 9:51:00 AM

Sawyer Young and Shelli Young

Local boy receives Make-A-Wish gift


Imagine being born in China, being left in a children's home, being adopted, moving halfway around the world, then being diagnosed with a terminal condition, all by the time you were 3 years old. That is reality for little Sawyer Young.

Sawyer, the son of Shelli Young of Leesburg, has been diagnosed with terminal neurocutaneous melanosis, which affects neurological skills and can visually be seen as patches of pigmented skin.

"I thought I was helping him, when I brought him back to the United States," Young said. "But, I quickly learned that he taught me what love is really about."

Make-A-Wish provided a play set which was recently installed at the Youngs' home to help stimulate his sensory development. The festivities concluded with a reveal party that was provided by Good News Gathering church. The family would like to thank the Highland County North Fire Department for bringing a fire truck and ambulance for the children to explore, Kroger's for their donation of balloons and Brad's Garden center for their wish garden landscape design.

Make-A-Wish and its volunteers have made over 167,000 wishes come true since 1980.

Reveal Day....

Oh what a great day...GNG had the best party ever! The menonite Church was so kind as to let us borrow their church because we were worried about weather. Kroger donated ballons, the local fire dept sent the fire trucks...we are so incredibly blessed!

Well...here it is!

Just before the reveal party here is the new set all ready to go. It is absolutely beautiful! THANK YOU MAKE A WISH!

The playset goes up!!!!

The Recreation's Outlet folks showed up Friday afternoon to install the playset...it took them until 10pm...but they got it done! It looks great and Sawyer just loves it...as do the other children! :-)

Getting ready for the playset...

Well, only a few more days and the playset will become a reality in the backyard. The GNG Youth group came over to assist with the landscaping which was a huge help...my back is killing me!!! Check out Sawyer surveying the gravel pile and Soph doing a little gardening....

Make A Wish...Wish being Granted

Well we are drawing near to the day of Sawyer's wish being granted...the new playset will be installed on 5/30 and we are going to enjoy a party to unveil the set on 5/31 at noon...PLEASE COME!!!!we are so excited...check it out!!!

Sarah's Birthday...WOW #8

I can't believe my little girl is 8 years old...OMG! Check out the party photos!

My new job...

Well, after 16 years I'm leaving my comfort zone, and venturing out into the corporate world. I have accepted a new position with WorkflowOne. I'm pretty excited and looking forward to the challenge....wish me luck!

Make A Wish Decision

Well....the decision is an outdoor play set for soybean...he will love it!...as will the other children I might ad. We are going to be working with Recreation Outlet to determine the set and the things that would be suit him...yeah!

Check us out...

Mini me and my little Soph together check us out at the tulip garden....

Make A Wish Foundation

Well, we just received a letter from the Make A Wish foundation that Sawyer is going to be receiving a wish...not sure I am exstatic, not exactly something you want your child to qualify for, but we are happy for him. We will see after meeting with them what his wish will be....yippie!

Happy Birthday Soybean

Well, we sure know how to have fun and thank you Naomi and Hedda for sending me to Chuckie Cheese's with 5 kids...AAAHHHH, who loves you? LOL! Sawyer had a wonderful time as did the other children!

Just an update

Nothing huge on Sawyer he is on Depakote sprinkles which seem to be
controlling his seizures for now. He still seems to have some small
seizures but I'm okay with the little ones after the big one! I was
going to respond to the email chain on the wonderful comments we
get...I was in the emergency room with him on Friday night because he
had a terrible fever that I could not keep down, it was 104.3 and I
was worried it would spawn a seizure. There was an older gentleman
that stopped, stared and then said "I sure hope that's not
contageous!"...sheesh. I sat there a second and responded with, "I was
thinking the same thing about your ignorance!". Some of the folks in
the place looked at me and smiled or winked. hehe!

We have another appt with Sawyer's Doctor in a week to review if we
will remove any of his questionable nevi. They halted due to his
seizures, but now I'm wondering with his prognosis if it is even worth
it to put him through it...we'll continue to pray and hope that God
will help us answer that question. How sleepy can playing with a string make you????

Merry Christmas

Well, although tired it was a great day for us all. Sophie's first US Christmas and she had a blast. Sawyer was very tired and uninterested, but I thank you all for the nice gifts for him! Sarah loved her webkins...thank you Kelly's! Samuel about passed out from the Ipod...thank you Wanderleigh's! and Naomi and Hedda...thank you so much for all making this such a wonderful Christmas!

We're back at Children's

Well, I'm back at Children's, spent the night here. He had a seizure
that lasted an hour and 10 or 15 minutes. This is freaking me
out...sheesh. I think my children were more calm than I was. My 7 yr
old called 911 after the rectal diastat didn't work, she said "my baby
brother is having a seizure" and then hung up. Well they of course
called back and my 9 yr old son picked up the phone...he paused as if
to listen and then said..."Nope, you can't talk to her, she's freaking
out, what do you need." Isn't he funny. I immediately felt like "you
had better get your act together!".

He is getting poked and prodded today, not a happy day, he is pretty
sedated for now. I'll update when I know what they are going to do.

Shelli

Cinci Children's Bldg A, Floor 7 room 43

Diagnosis finally

I heard from the Dr. after reading the MRI here is what he said. Sawyer is suffering from Neurocutaneous Melanosis when symptomatic or otherwise manifests neurologically, it carries a poor prognosis even in the absence of malignancy. Sawyer has multiple lesions that are deep seated within his brain. There is NO validation of malignancy. The problem with this disease is that you just don't know. The lesions can grow and cause neurological issues, which is where the seizures are coming from. Dr. Krueger will read the MRI to determine if there is any possibility of removal, however this is not often the case unless there are major changes in symptoms.

Forgive me if I have spotty info, I don't know a lot about the illness as it is considered a RARE disease. I have joined the Nevus Outreach and there are folks there that have children with this disease who I can network with.

Sawyer is in hospital...

Sawyer has been having some seizures recently and was just admitted to the hospital for them. He will be having an MRI on the 22nd to determine if he does in fact have NCM, let's pray he does not! His condition was far worse than was known before his adoption. We know very little at this time but would like you to also hima and my other children in your Thanksgiving prayers as they go through these difficult times

Check out the family picture...

We went out to eat at Brio and had a great time. The kids loved spending time with Papa Dick, Nana Suzie and Nana Diane. Sarah also got to see Brutus...hehe!

I love cookies!!! COOKIES!!

Sawyer has this fascination with nilla waffers...don't we all! Wait until I add the banana pudding! He is starting to show signs of coming out of his little shell every day. We just absolutely love him!

To the petting zoo we go....

We spent the day at Young's Dairy...not my dairy, but wish it was!!! The kids had a blast petting the animals, playing with water balloons and going through the corn maze...luckily I made it out with ALL the children!!!