Hello! I cannot believe how long it has been since I have updated! Thank to JBWellman Designs, Jessica Wellman for our beautiful new look! We have been doing wonderful. Will has been participating in a Natural History Study for Sanfilippo MPSlllA. We have traveled to Minnesota for 3 visits and we are going back in August. Will has lost most of his speech in the last year. We have been realizing it but doing the study has magnified his decline. He has been doing well overall health wise. He did experience a couple of months where he was feeling unwell with no explanation as to why. He is doing much better now and is smiling and happy once again. He graduated 3rd grade and will be attending intermediate school next year. This has me more than anxious. A new set of teachers to learn Will and his ways. Nicole is doing well and had a wonderful year at her new school. She will be entering 7th grade in August. We are very happy with her progress academically and socially. She is enjoying being involved in plays and music theatre locally. She will be on the middle school volleyball team this year and is anticipating a fantastic school year.

I hope you are happy and well. As always, thank you for checking in on us and please continue to pray for a cure.

Happy fall, ya'll! What beautiful weather w have been blessed with lately. I hope that you are experiencing it as well. Will has concluded his participation in the Natural History Study of Sanfilippo. What that means is that they just wathced and tracked the progression of his disorder over a years time. He was evaluated a year ago, returned 6 months later and just finished up the final visit. We met with the doctors and therapists in Minnesota. Will was subjected to cognitive evaluations and a sedation for n MRI, LP (spinal tap), blood and urine draws and hearing tests. He declined in his overall function including speech and fine motor skills. This is what one would expect given the nature of the disease. It is progressively degenerative. He still is happy and healthy, other than the fact that he has this disorder. he continues to show so much love and a beautiful spirit. I so wish that I knew the full Will...who he could have been, what he could have done. He is so sweet and loving, I know that he would have made a spectacular....something! We love and cherish the Will that he is but I long to know the Will he could have been.

We do hope that this study will produce a treatment in the near future. I believe Will may be too far regressed to participate but I think that what we have offered will continue to be helpful in the quest for a viable treatment. Many promising treatments are on the horizon. We are still hopeful that Pfizer, that purchased Zacharons compound, will have something soon. The French foundation, Alliance Sanfilippo, has funded a stem cell transplant trial that was to begin in September but has been delayed. Also the Gene therapy that we helped fund with the Pespi money, Ben's Dream has been funding Dr. Fu in her quest for years, we hold out hope that she will be granted a human clinical trial in the near future. Also, we are trying to screen the FDA library for an approved drug that we could possibly use now to keep our children healthy enough to participate in any of the trials for the near future. It all takes time and time is the one thing tat we do not have...

 Nicole continues to impress us all with her continued loving support for her brother. She began a new school this year. I had not wanted to burden her with raising awareness to her new peers. I removed my magnetic signs from my vehicle which read "Please help save my son  ww.miracle4will.com" and I did not inform the teachers of our home life, except for one, who had been extra friendly to us. Nicole began her school career. She was given the opportunity to sign up for clubs. One of the clubs she signed up for is a service club. I assumed they already had a community service in place. On her first contact with this group they were asked for suggestion for any ideas of places or foundations that were in need of service. Of course, Nicole without pause, told them about her brother and our plight, she makes us so very proud.

We look forward to a wonderful school year and holidays that are just around the corner. Please remember to be kind to those you meet. You never know what burden or crisis another may be facing. We all really need to treat others as we would like to be treated. As always, thank you for checking in on us and please continue to pray for a cure.

Hi, sorry to post again so soon but I am asking for help. We are trying to win a grant from Pepsi. The top 2 Foundations each win $250,000.00 This could help us so very much. We have a Gene Therapy project we are trying to fund. You can vote daily from this link, from facebook and a text vote...text 105582 to 73774 That is 3 votes a day. Please share this with everybody you know and help us win this money!! http://www.refresheverything.com/curesanfilippo   

As always, thank you for checking in on us and please continue to pray for a cure!! And VOTE!!!

Hi, sorry to post again so soon but I am asking for help. We are trying to win a grant from Pepsi. The top 2 Foundations each win $250,000.00 This could help us so very much. We have a Gene Therapy project we are trying to fund. You can vote daily from this link, from facebook and a text vote...text 105582 to 73774 That is 3 votes a day. Please share this with everybody you know and help us win this money!! http://www.refresheverything.com/curesanfilippo   

Thank you for voting, we are currently in 1st place but we need to stay there. PLEASE forward this link and text information to your inbox!!

If you are on Facebook, please friend me and get the facebook link too!!

As always, thank you for checking in on us and please continue to pray for a cure!! And VOTE!!!

Hi, sorry to post again so soon but I am asking for help. We are trying to win a grant from Pepsi. The top 2 Foundations each win $250,000.00 This could help us so very much. We have a Gene Therapy project we are trying to fund. You can vote daily from this link, from facebook and a text vote...text 105582 to 73774 That is 3 votes a day. Please share this with everybody you know and help us win this money!! http://www.refresheverything.com/curesanfilippo   

Thank you for voting, we are currently in 1st place but we need to stay there. PLEASE forward this link and text information to your inbox!!

If you are on Facebook, please friend me and get the facebook link too!!

As always, thank you for checking in on us and please continue to pray for a cure!! And VOTE!!!

Hello! Wow, we have the sun shining here in Alabama! I hope wherever you are the sun is shining too! I updated about our beautiful event last week and failed to mention Will's birthday. Will turned 8 on February 10th. We are holding off on a party until it warms up as we enjoy having outdoor parties. I am so happy that Will is doing so well to have Sanfilippo and be 8 years old. These birthday's are suppose to be so precious for parents but I tend to sink a little. We were given an expiration date with Will's diagnoses...10-20. A few months ago a 7 year old passed away, in Switzerland a 20 year old is still doing well. These emotions are usually kept at bay by staying busy but birthdays bring it to the surface for me. I love my little man so very much and I hate watching him slip away. While other 8 year olds are riding their bicycles, reading, learning to dive, playing baseball. Will is forgetting words, unable to ride a bike or read. His future is stolen from him as he slips away. Our friend Hunter had pnemonia so bad that he had to be intubated, he is 12, he is doing much better and was extubated yesterday. Our friend Stefanee, who is 15, is unable to accept her tube feeds any longer. Her body is shutting down and she is being made comfortable with morphine. Please, keep her family in your prayers. These are difficult things to accept when it is an eldery parent or grandparent but your child? There is something very wrong when money is the main reason why there is no treatment for these children. Really?...

Valentine's day is Monday, please enjoy your day, praise your children for their successes big and small, smile and receive smiles, know that you are loved because your child can tell you. Enjoy all that comes with raising a healthy, happy child. I too will enjoy my children, their successes big and small, receive smiles and smile in return and I will know that I am loved because of that beautiful smile...We love our children just as you love yours!

As always,thank you for checking in on us, and please continue to pray for a cure.

We, as a Sanfilippo family, have had a very rough month. Stephanee, Sarah, Jasmine and now Bailey have all passed away. Rachel is still in the hospital. The girls who passed away range from 12 to 15 years of age. I know that the sufferment that their parents face will last a life time. Those smiling, innocent and loving faces, so full of love and joy now bring their parents moments of agony and pain. I feel these deaths with such intensity, I have never met these families but they are part of me and my life. Please continue to keep these families in your prayers. As I write about such painful events, I am uplifted by the strength and character of these families. They lift their heads high, even in the depth of their sorrows, to help others understand the joy and happiness that their loved one's shared with the world. If you have ever met Will or any of the children affected with Sanfilippo, you know what I mean. Even with all of their physical and mental issues, they shine bright among us all! They are some of the greatest teachers you will ever know. Things of great importance to most of us, monetary success, personal apperance, means nothing to these children. They love fully and unconditionally, they laugh from deep within, they cry when it hurts, no drama, no pretence, they are who they are. I hope that I learn the lessons I am to learn from all of this pain. I hope that I am given the grace that is needed to make it through this life with unconditional love and kindness. I hope that I can be the person, Will loves me for being, to all people. Try to be the person God intended at least for today and honor the lives of these young women. For me, I will try to be that person today and every day that follows...

As always, thank you for checking in on us and PLEASE continue to pray for a cure.

Hello! Wow, we have had a very hot beginning to our summer in Alabama! Speaking of weather in Alabama, we had a tornado come through, on the ground for over 180 miles. Many devestated areas all around us. We were spared any damage and feel blessed. Many lost lives and property. Please keep the affected families in your prayers. The positive thing from all of this is the overwhelming community support for the affected areas. So many have stepped up and offered goods and services, it brings back faith in mankind.

May 15th was MPS Awareness Day. We did not participate in an awareness event or fundasing event, due to the massive volunteer and fundraising effort, in Alabama, for tornado victims. Now that FEMA and private insurance can pick up some of the effort, possibly we can scheduele a fundraising event for early fall.

We have had many ups and downs in the past few months. Our second visit to Minnesota showed that Will has lost 5 months of speech and fine motor skills. It may not sound like a lot until you factor in that Will has the ability of, at best, a two year old. They have now evaluated him at the skill level of a 19 month old. As I type this tears are streaming down. It is not that I was unaware of his decline, it is just so very difficult to face he fact that this disorder is winning. We are fighting so desperately to save Will and all children with Sanfilippo, and we are in a losing battle against time. There are many new and exciting theapies on the horizon. I do keep hope alive but realistically speaking it will be too late for Will. Our hard work and dedication, will indeed help the next generation of children. My hope is that within the next five years another family will not be told, there is no treatment. With that being said many wonderful things are happening in the field of research for Sanfilippo. Dr. Haiyan Fu was just approved, by the NIH, to begin the toxicicty studies of her compound. The Pepsi Grant that was awarded to Team Sanfilippo is being used to help fund Dr.Fu, unfortunately, that money may not be used for animal testing and the toxicicity studies require animal testing. PLEASE do not get upset about animal testing, I know, I too use to feel that way but my son is dying, if they would test it on me...or him, know I would gladly give it a try but that is not the way things are done. Also Zacharon's compound was purchased by a large pharmaceutical company. We are searching for anything that may possibly help our children. We are looking into anything being studied on other lysosomal diorders or other neurodegenerative disorders. We are looking for that needle in a haystack. Our desire is to fund projects that offer promise for any type of Sanfilippo. There are A, B, C and D subtypes of Sanfilippo syndrome. The difference in each type is the enzyme that is missing of deficient.

I am greeted each morning by galloping giggles from a very sweet and happy bouncing baby boy. We are so truly blessed that he is still as healthy and able bodied as he is, he is a true joy and gift from God. Our life is always a bit lopsided as Nicole reaches high expectations, Will is losing ground. With that being said, Nicole graduated fifth grade with high honors and much fanfare. The girls wear white dresses and the boys blue coats. It is a beautiful ceremony and an exciting time for these young children. We have been honored to be part of the family at Southminster Day School.. Nicole attended school there from first through fifth grades. If you are considering school options for a child, Southminster is an excellent choice, in a Christian environment. Nicole will be entering sixth grade at another local school and we couldn't be more proud of our precious girl. She is a true gift to Will...she is a gift to us all but she totally understands our situation and embraces Will with nothing less than true love and kindness. She is never embarassed or self conscious of Will's effect on her life. She is wise beyond her years and I cannot wait to see what her future holds.

As always, thank you for checking in on us and PLEASE continue to pray for a cure.

Hello! Wow what a ride we have been on lately. As the country mourns the loss of those on 9/11, I am realizing our blessings of the past few months. We have participated in and won, yet another Facebook game. We entered the Vivint Gives Back promotion. Team Sanfilippo Foundation was incorporated in New York, so we entered in the Eastern division and won $100,000 to go torward research! These types of contests are wonderful for a group such as ours. First, we all live in different parts of the world, so this way we can come together as a community and make a huge impact together. Secondly, fundraising is difficult and time consuming, we can earn a huge amount of money in a short time. The Vivint Gives Back project is so unique, in the fact that their employees give this money. They donate commissions and part of their paychecks to give back and Vivint matches those gifts. Me, Kathy Buckley and Carl Kapes had the great priveledge of flying to Utah to accept the check and speak to the amazing people who gave of themselves to make this happen. We are truly blessed! Right now the area of research for Sanfilippo syndrome is accelerating, on the horizon we have enzyme replacement therapy, gene therapy and inhibitors that are being studied and close to the realization of a treatment for our children. We need time and money...time we cannot give but we are trying our best to study treatments that could help our kids right now, so they they remain healthy enough to receive the cure when it comes along! Money, we are making great strides as our community comes together for the cause!

During all of this Facebook event, we participated in a local fundraising event. The Macy's Shop for a Cause event. Macy's allows local charities to sell a discount card for $5.00 allowing the purchaser a day of discounts in the store. We sold about 30, the store asked us if we would like to participate by selling the discount cards in the store. Nicole and I set up on our small table, at the entrance ,with our foundation brochures and the discount cards. The first hour of our 4 hour commitement started off without much enthusiasm. I began my..."Would you like to purchase a....."NO" ... Nicole being a sensitive 11 year old was becoming increasingly offended by the acts of rejection. She actally felt offended as though the customers did not care about her brother. I assured her things would get better. A few customers purchased the card but did not ask anything about our cause. As with most of these events, I am left feeling so blessed by the end. A day that I thought would be selling a few cards, turned into an emotional uplifting of my spirits. Two women, on this day, touched my emotions so deeply. One sweet woman was a Physical Therapist and was intrigued and wanted to learn more, she left a $50.00 donation. I explained the condition and circumstances of the future for our children and she was truly moved by our plight. Another, young woman purchased a ticket, took a brochure and walked away. About an hour went by, she showed back up at our table with a check in her hand folded, she quietly said, " you need this more than I do" I thanked her and after she walked away, I unfolded the check for $100.00...don't get me wrong I do not look at people as dollar signs or what they can do for me...it was the emotions and understanding that these two women represented. Their kind jestures are more than a donation, they are pure and simple acts of human kindness.... Thanks to all of you who support us, pray for us, vote with us and offer a small word or jesture of kindness torward us in our time of need. These are truly acts of good will toward men.

As always thank you for your support and please, continue to pray for a cure.

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