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Written by Misty Luthcke
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Hello! I hope that you are enjoying cooler temperatures! We are now enjoying temperatures under 95! Both children have started school. Will actually had picture day today. They always seem to get a wonderful photo of him, at home I can take 25 photos and have 1 that I decide is good enough. My goal this year for Will, is to get the school to offer him physical therapy. Nicole had her first day today. She is very excited as she is a fifth grader! Her school is 4k-5th grade, so she is big man on campus!
Please, remember our fishing tournament. My brother Bryan and sister in law Angie, have been working very had to make this years tournament a huge success. Click on the boat on the home page. You can print out a registration form and send it in! It will be September 25th at Paradise Point Marina on Lay Lake.
Also, many people have requested that I post here when Louis is cooking. Louis is cooking Thursday and the meat will be ready on Friday. Boston Butts 8lb pre-cooked weight for $30.00 and Baby back ribs $20.00 per slab. If you would like to order, please e-mail
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and let me know what you would like and we will set up a delivery place.
As always, thank you for checking in on us and please continue to pray for a cure! |
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Written by Misty Luthcke
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I hope you are keeping cool! What a heat wave...even the North is 100 degrees. We received the hearing assesment from our trip to Minnesota. It shows that WIll has moderate to severe hearing loss in each ear. I feel so devesated by this outcome. We tried hearing aides a couple of years ago but he would not leave them in. At that time, his hearing loss was not as severe and I didn't really believe it. Now that we have had this hearing test, I cannot deny it any longer. I suppose we will re-visit hearing aides. He would be saying so much more, if he could hear.
Calling all fisher- people!! The Fishing 4 Will Tournament will be held September 25 safe light-3p.m.. Paradise Point Marina on Lay Lake. If 100 boats register the pay out will be $2,500 first place prize, $1,200 second place and $600.00 3rd place. There will be a seperate big fish prize cost $10.00 also a no weigh $100.00 prize. We have some great draw prizes. Our sponsors, thus far are Nichols Outfiters, Bone Fish Grill, Reaction Innovation, L& L Metal Fabricators, Mark's Outdoors, Ken's Auto Parts, Phoenix Boats, Greene's Buisness Machines. Please join us for a great tournament and a great cause!!
We are funding some very progressive research that we are very excited about. Zacharon Pharmaceuticals has a compound that could possibly help MPSl, MPSll and MPSlll ! This is incredible and we feel blessed to be part of it.
As always, thank you for checking in on us and please continue to pray for a cure. |
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Written by Misty Luthcke
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Hello! We just had a beautiful wedding for my neice Dawn. She was a beautiful bride, he a handsome groom and it was a wonderful event.She married David Meyers on July 10th. It was a family operation. Angie, Dawn's mother made the bouquets and table decorations. I helped decorate the hall and cater the food. John, Craig and Bryan helped with the catering and set-up and everybody pitched in on clean up and take down.Thanks to Michele for readying Nicole for the big event while I worked! The Meyers family provided the space, the rehearsal dinner and helped with set-up and clean up.It was so nice meeting all of them and we hope to see you all again very soon. David's mother was hospitalized having surgery and was unable to attend. We wish her a speedy recovery and she was greatly missed at this joyous event.
Will is doing very well. We have noticed a lot of speech being lost lately but it is truly a miracle that he still has speech at 7 1/2. It is very sad to notice what he is not saying anymore. Overall he is happy and healthy and keeps us smiling each day.
As always, thank you for checking in on us and please continue to pray for a cure. |
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Written by Misty Luthcke
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WOW!! We had such a great yard sale! So much loving support always is uplifting! I owe a huge thanks to all of you who donated so generously your personal possessions to make a difference in the lives of some many beautiful children!! On to all of the wonderful friends and family who donated their time. Bryan, Angie,Loretta, David, Chase, Stephanie,Hope Craig, John, Renee, Billy, Ben, Anna, Doug, Michele, Judy, Patrick, Michele, Regina, Sharon, Mickey, Vanessa, Ray, Bianca, Abby, Emma, Macie, Tucker, Lake, Ashley, Jack, Brian, Laura, Kelly, Michael, Stacey, Carol for yummy bread!...and if I have not typed your name PLEASE forgive me I will rmember at 2 a.m. and add you!! LOL We had a great turn out sold lots of ribs and BBQ meat. We gave donations of fabric to a sewing ministry, some chairs and baked goods to the Fire Department and donated what didn't sale to the Salvation Army. It was overcast to begin with and got hot and sunny around noon. We met some interesting people and had a lotof fun. Thank for your many prayers.
We also went to Minneapolis and Will participated in a Natural History Study for Sanfilippo Syndrome. He had a cognitive evaluation, a behavioral evaluation and he was sedated for 5 hours to have an MRI, Lumbar Puncture, blood draws and a cathetersation for urinalysis and he had his ear tubes replaced. He did very well and we are very happy to be home.
As always, thank you for checking in on us and please continue to pray for a cure. |
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Written by Misty Luthcke
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3rd Annual Yard Sale...
It will be HUGE we have tons of stuff.
Furniture, clothes, kids items, landscape items, electronics, vintage patterns and fabrics...
Saturday 26th from 8-1
Smoked ribs, bake sale, lemonade stand...
Lakeside Baptist Church Parking lot....
We could use some packing and unpacking help!!
Any high schoolers need service hours?? Please come and help us!!
we will arrive at the church by 6 a.m.to unload
PLEASE RE-POST IF YOU HAVE FRIENDS IN BIRMINGHAM!!!
contact 238-1151 for more info. |
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Written by Misty Luthcke
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We have finally decided on a date for the yard sale! June 26th 8 a.m.- 1 p.m. Lakeside Baptist Church Parking lot off of Old Rocky Ridge Road in Hoover. If you know where we live...please come help load the truck on Friday. Louis will be smoking ribs, Nicole and I will be baking and we will be loading the truck. We hope to arrive at the church by 6 a.m. if anybody can meet us thee to unload and set up we would REALLY appreciate it!! If you have a moment in your day on Saturday to help with the sale, in any capacity, we would truly appreciate your help. It truly takes a village!! It is a long, hot day but I promise when you look into Will's eyes...it makes it worth it. We are trying to fund a research company called Zacharon Pharmaceuticals. If there compound works as it should, it would not only be a treatment for Sanfilippo but several MPS Disorders!! We are also looking into any and all other possible treatments to fund and investigational opportunities as well.
We will be travelling to Minneapolis on the 27th for Will to undergo, behavioral and cognitive evaluations as well as a sedated MRI and spinal tap. This is a natural history study of the disorder that Shire Pharmaceuticals is funding. They will do a baseline, 6 month and 1 year studies to track the progression of the disorder. Yes, Will is a human lab rat...BUT we do feel that this is very important for the researchers to better understand this disorder and to finding possible treatments. Please say a prayer for our safe travels and that Will handles the anesthesia well.
To update about our friend Preston, they are keeping him comfortable...
As always, thank you for checking in on us and please, continue to pray for a cure. |
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Written by Misty Luthcke
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Please pray for our forum friend Preston. He is in the end stage of Sanfilippo syndrome....HE IS AN 11 YEAR OLD BOY!!! |
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Written by Misty Luthcke
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Southminster had a wonderful chapel today! Nicole was given the opportunity to speak about MPS Awareness, she did a great job. She sang a beautiful song with two other classmates. Then the fourth grade sang I Can Only Imagine. I used this song in an MPS slideshow I made, so I was crying like a baby!! I am posting a photo of our awareness banner and yard signs that we placed at Nicole and Will's schools, so click on photos, if you'd like to see it. We passed out ribbons, awareness cards and purple laffy taffy today. If you own something purple, please wear it on the 15th, if not maybe make a ribbon and tell others about this website!
I keep forgetting to comment that Our Make A Wish volunteers came out for a home visit a couple of weeks ago. Stephanie and Emily were so very sweet and Will really enjoyed spending time with them. We will hopefully plan a trip for the Fall. Thanks to all of the Make A Wish Volunteers for doing what you do for us!!
As always, tthank you for checking in on us and please, continue to pray for a cure. |
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Written by Misty Luthcke
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Hi, I hope you are doing well. We have been enjoying some magnificent weather down south! Will's birthday is in February but we wanted to have an outdoor party, so we waited until now! A little later than I had hoped but we finally celebrated at Oak Mountain Sate Park. We love going to the petting farm there. If you live locally and have not been it is a real treat. We began the party at the stables and were all treated to horse back rides around a ring and then headed over to the petting farm. It was a georgous day and we had a lot of fun! Thanks for all who attended and made Will's day special. I have posted a few photos, if you are interested. Mother's Day has been wonderful....I have done nothing! Nicole made me a beautiful neclace, Will gave me lots of hugs and Louis cleaned my car, what more would any woman want? I will stil update with the date of the yard sale. We keep having other events coming up , so the date keeps changing. Hopefully I will have that soon. Happy Mother's Day to all of us wonderful mother's. I know that my life would not be complete without my two beautiful children that make me whole! As always, thank you for checking in on us and please, continue to pray for a cure! |
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Written by Misty Luthcke
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Hi, I hope this update finds you happy and well! Just a reminder that MPS Awareness Day is May 15th. Please wear purple or a purple ribbon and tell someone else about our plight. I am making ribbons this weekend, so if you would like some, let me know, I will send them to you. We are all doing very well. Nicole's school play is on Thursday and she is very excited! She is playing the part of Billie Holliday in a play about Jazz music. Her music teacher is such a wonderful person and we are so blessed that she is at Southminster. We are still having the yard sale. It has been pushed back to June, now. I will update as soon as I know the details. Happy Mother's Day to all of us!! As always, thank you for checking in on us and please, continue to pray for a cure. |
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Written by Misty Luthcke
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Happy belated Easter. We had a beautiful Easter with lots of wonderfully patient and kind family members!! We are very fortunate that everybody is so understanding of Will and his disorder.I hope that you are enjoying the beautiful weather that we are blessed with having. Our family is really enjoying the outdoors. We are looking forward to the wonderful school year ending and having some lazy days by the pool. Our luck abounds with wonderful teachers for both Nicole and Will. Nicole adores her teacher, school and classmates. Will has a wonderful "team" of teachers that have learned how to best teach him with his cognitive restraints.The three year mark of our suspected diagnoses has come and gone. We received the actual diagnoses in June but the doctor told us of his suspicion of an MPS diagnoses on April 6th. :( I have been noticing a decline in his speech lately and it is very heartbreaking. We are very fortunate that he has the ability to speak. Other MPS children have never had the ability to speak or lose it long before the age of 7. We have some MPS friends having difficult times right now, so please keep them in your prayers. I wanted to tell you about my encounters of the past weeks. My car has a magnet on the side that says Please help save my son www.miracle4will.com On occasion, I am asked about what it means and if you know me, I give the whole story. I had a fireman approach me as I was pumping gas. He was very kind and said he may be able to help out in some way. Yesterday, leaving the grocery store, a kind woman asked. She donated $10.00 and offered many prayers. It is moments such as this that touch my heart deeply. To anybody who has reached out to me thank you, it just helps to know that you care! We are hopefully having our 3rd annual yard sale on MPS Awareness Day, which is May 15th. Also, the fishing tournament in September and an addition of a dinner/auction in October. Please, keep checking for additional updates on these fundraisers. We need to raise $2 million for a promising treatment that needs our funding to have it available in Will's lifetime. Happy spring! As always, thank you for checking in on us and please continue to pray for a cure. |
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Written by Misty Luthcke
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We were delighted with a surprise visit this week! Suzanne, Brad and Quinn Gregory stopped by on their way home to Mississippi. They came to Birmingham to be guests on the Rick and Bubba show! Quinn has Sanfilippo syndrome and was just diagnosed it October. They are doing a fabulous job already raising awareness and much needed $$. The Junior Miss in their town hosted a fun run with family activities on Saturday and then they were here on Monday! They had to give me an hour to try to straighten the house and myself but they ended up here with the house a little unstuffed and me with no makeup on (lol) the life of a mom! They were so very cute and Quinn and Will played well together. I am so very impressed that Quinn wears hearing aides. Will would not keep them in but we didn't try until 4 and Quinn is 3. They said he didn't always leave them in but he had them in the entire time he was here. Will is the first older Sanfilippo child that they have met. I so wanted him to show them how much he can do and say but he decided to be the strong silent type. He showed them how he likes to grab and slap people though. We hope that they will come for another visit over the summer. It was such a joy to meet them.
Ciara an Lucas H.are doing much better. Lucas M. was just told his hips are very bad off with no remaining cartiledge. Please keep their family in your prayers as they decide the best way to help him to be mobile as long as possible, he is only 12. As always, thank you for checking in on us and please continue to pray for a cure. |
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Family Updates
