Miracle 4 Will

I saw your car driving down Valleydale on my way to work & was led to your website. I have 2 sons, the oldest (Kai) was diagnosed with Celiac disease about 2 years ago. Although Celiac disease is not debilitating or life-threatening, I understand how difficult it is to have a child that is "different". My heart and prayers go out to you & you family, please accept my donation for Will.

As a side note, I work at Embroidery General across the street from the fire station on Valleydale. I notice you sell t-shirts as a fundraiser. I'm not sure what our rates are (I work in the production area, not sales) but I do know we print shirts for several other fundraising groups. We recently ran an order for the Janie Sims foundation (they do all of the yellow "Curing Childhood Cancer" license plates you see around). It may be worth your time stopping by and talking to the owner, Rick. Like I said, I have no idea what our rates are on shirts, but he may have some good fundraising ideas or contacts for you.

God Bless You, your family is in my prayers - Damian

Just checking to see how you are doing. Hope Will feels better soon and that you get the volunteer's you need. Wish we lived closer. Give Will a hug for me!

Hi, Misty,

Just thought I'd drop in to leave you with a hello and check in on y'all. Hope your boy is doing great and still the lovin' sweet thing as always.

Drew just turned 7 last Friday. My, how quickly the time passed!

Jamie is almost 4 and following in brother's footsteps. He's our little Tagalong!

Kevin is in the throes of tax season, so we're hunkering down and waiting for some warmer weather. We've got cabin fever bigtime!

I am knitting and painting when not chauffering, cooking, cleaning, ironing, or grocery shopping. har har har

Please give yourselves a hug for me. Hoping to see you soon...

Luthcke family,

I was just stopping by to let you know that you continue to be in my thoughts and prayers. God bless.

Misty,

I met you on the airplane when you were coming back from New Jersey. I have told many people about Will and they and myself have all been praying for him. He is adorable and looks very happy! Your family and especially Will are in my prays. I hope you had a great thanksgiving!

Misty-

I saw you the other day as I was on the bus going to school. I have since read all of your journals, and I am humbled by Will's story. What an extraordinary little guy you have. I will be praying for you guys. God bless

wow, I will have to read that article a few times before it sinks in ! Wonderful news. I just want to hug every research PHD, MD, Student on the team....the fishing tournament was wonderful. I am thankful to be a part of such a loving and committed group of volunteers.

much love

aunt Michele

Thanks for stopping by Nathan's CB. The Walk/Run was a success and thanks for thinking of us. YES if you come to Boone this winter please contact us and maybe we could meet to say HELLO. We live between Sugar & Beech Mtn.

Hi Misty!

I just wanted to say thank you for all that you are doing towards new research for Sanfilippo Syndrome.

I dream of doing the same but just can't figure out how to carve out the time to do it. But you have found a way and it is a tremendous accomplishment, so again, thank you!!

So glad that Will and Nicole are enjoying school. I'll be looking forward to the next update. Love, Joanne (Sasha's Mom)

Misty,

Estes Warehouse tires has donated 2 free oil changes again. Prudential Realty has agreed to donate $500.00 for the fishing tournment....hang in there, things will come together.

Much Love,

Michele

Misty,

I was parked next to you today at Academy Sports. I saw the website on the side of your SUV and also saw Will inside. I went home and immediately looked up the website. I had no idea the disease even existed. I've since read your story and updates. I'll definitely be donating, telling my friends about it and most of all, praying for Will and your family.

Blessings,

Jane Sanford

Hi Misty,

Handling things well is all a state of mind.  Believe me when I tell you I am walking the line of handling it well and falling apart as I'm sure you are familiar with. Hang in there we all help each other and I thank you for helping me.  

Misty,

What a wonderful day...you danced ? Will and I had some special time together. He is so sweet. I believe he understands more than I give him credit for. Thank you for mentioning our mother...she was so incredible. I will never understand why she had to suffer like she did or why Will has so much to endure ahead of him. Just know that I will always be here for you and your precious Will.

Much love,

Michele

Hi Misty,

I just read your most recent update and felt such pangs of grief while reading it. You described the phases of a mother's emotions so well through your writing. Thank you for all that you are doing to raise awareness and funds toward eradicating this horrible disease. Joanne, Mom to Sasha

Misty,

I'm sorry that we haven't managed to get together this summer. We will go to the Run for Erin, so hopefully can meet up then - if not before.

Take care,

Laura

Misty, I completely understand how you feel about what seems to not be being done for our children with Sanfilippo. I was in that state for a long time until I read that the research that they are doing with Alzheimers has found a link to Sanfilippo... the article I read stated:

“This is really exciting,” said co-author Stanislav Karsten, a UCLA assistant professor of neurology and of obstetrics and gynecology. “If we can replicate our discovery of P-tau in the brains of human patients, it may be possible to treat Sanfilippo syndrome with new drugs created for Alzheimer’s disease. We believe our finding will accelerate the development of an effective therapy for this heartbreaking disorder.”

There was more to the article too. But that made so much difference in my thinking that I continue to search for other disorder links and also found another, Battan disease also has some clinical trials going on that if prove well could also help our children with Sanfilippo.

I do get upset everytime I see funds being raised for other illnesses, but some actually would help in the acceleration of those who are searching for the cure we seek. We need to make others not just aware of how rare and unique our childrens disorders are, but also how much they have in common with those that are getting the research backing. Maybe as we educate those who do not understand things will soon turn in the right direction. So hold HOPE and continue to see the good that our Boys have brought to our lives.

THinking of you with understanding...

hugs

Mommy Koren to Bryce

www.caringbridge.org/visit/fightforbryce

Dear Misty,

I chatted with you in the parking lot at Chuck E. Cheese today (my daughter, Olivia, was with me). It was so nice to meet you and Will! Thanks for letting me know about your website and what it is about. I am forwarding the site address and letting my local friends know about the fishing tournament.

Our prayers and thoughts are with all of you. Take Care and God Bless you!

Kristen Russo

happy birthday to you happy birthday to you happy birthday dear Misty happy birthday to you....july 21st is a very special day. We loved seeing you Tuesday Hope it was a special day for you too

love and kisses

Michele and Ethan

Hi Will-z-bear!

This is Em Joines (Emma J.). I read your story, I saw your photos, and you are so adorable!!!!!!!!!! You look so cute on Levi! Macie and Sid both say hi.

Love,

Emma J.

I thank you for signing Alan's guestbook. This is a hard time. First the diagnosis and now being away from home in hopes of what we are doing will benefit Alan even if only in the smallest way. This is hard to go through and I'm not sure it will get any easier. I hope to hear more from you and other family's that are dealing with this disorder and hope to become friends and share any and all information that will help us through each day.

Curious how you found us but it really doesn't matter just that you have.

God bless and take care.

Andy