June 7, 2011
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.