The best of news!

Hello,

As a follow up to Mike’s update and to thank all of you whom so willingly helped put such an incredible fundraiser together for us and Trey, I had a bit of my own to be thankful for that I would like everyone to know about (for those of you who weren’t there and didn’t witness firsthand).

As most of you have seen or read, not only did Dan and Robert host an exceptional fundraiser, they also got Trey and MPS a multitude of media attention. Since the articles and news reports ran we have been inundated with people calling the reporters, Trey’s bank, emailing us personally and on the blog spot wanting to help. One of those such people was a lady who read the Arizona Republic article then went to Trey’s blog spot and posted a comment about her son who has MPS VI and who lives’ right here in Tempe, ARIZONA! I have to be honest and tell you all that I thought it was a hoax and was up all night in tears in the thought that “what if, just what if, this is true?” How could our geneticist, the MPS VI specialist and the MPS Society not have known about this family only 10 miles away? Another reason I thought this may not be a vial comment was because the lady who left the post didn’t leave a return address. I posted a comment to “The Willis family” letting them know I had a million questions for them and could they leave a forwarding address. God answered my prayers! The very next morning an email address was left, contact was made and Mrs. Kaylene Willis had written me a two page email with many pictures attached of her beautiful family, of them, one that included her 20 year old son, Taylor who in fact has MPS VI! Jerry and Kaylene have three amazing children, along with Taylor , they have Brittany who is 23 and Makayla who is 15.

Kaylene’s email read like a fairy tale to my heart compared to what I’ve read and have been told about MPS VI since Trey’s diagnosis! Taylor was born in December 1987 and diagnosed in 1989. The Willis family was told that gene therapy was on the horizon and that they could wait for that (thank God they didn’t wait, they’d still be waiting) or that a doctor in Minnesota had been successful getting the missing enzyme back into the body with bone-marrow transplants (BMT). Brittany was Taylors only sibling at the time, was tested and was the perfect match for Taylor and the BMT. Kaylene goes on the write that Taylor has had 19 surgical procedures including carpal tunnel surgery and a bilateral hip surgery but has actually been healthier in general than his sisters. His mom brags (like all mom’s should ) that Taylor is a gym rat with abs of steel, some pretty awesome “guns” and 4% body fat. Taylor attends community college and can drive himself to most places. Their/his next big decision is cornea transplants and the timing for that. Most importantly “ Taylor is one tough dude that really handles life and its challenges quite well and that although he has some areas that are weak his strengths more than compensate for any weakness” says Kaylene.

As you can just imagine I was walking on clouds with this fantastic news and prayed with all that I have that Trey’s life will be as blessed as Taylors has been. What’s more is that along with Kaylene’s email she had left me contact phone numbers for her family. I was so ecstatic to let everyone know about this unbelievable news and how all of Dan and Robert’s efforts had restored hope in Mike and I’s lives that I called Kaylene and Taylor and asked if they would be able to come to Trey’s fundraiser that was being held that very night in only two hours. Low and behold…this wonderful family was there (with the exception of Makayla, who was cheering at a football game for Corona Del Sol High School that same night!). Trey got to meet Taylor (see attached picture) that night and Mike and I got to meet an amazing family who in an instant brightened our outlook into Trey’s future providing uplifting stories and encouraging words to this surreal roller coaster of emotions to which no doctor and/or the internet can come close to providing relief from.


Once again we have been blessed

Lots of Love,

Cami, Mike and the boys