June 7, 2011

Dear Stephanie,

I once heard a poignant explanation about the effect neuromuscular disorders can have on the lives they consume. It was equated to taking a picture of your life and turning it into a beautiful stained glass image and then having that portrait that worked so hard on for so long, smashed into a million little pieces while you stand idly by and watch it happen, unable to do anything but feel the pain and endure the suffering. I've always been one to look for silver linings and as that story took hold, I sought solace in the fact that at least there were a million little pieces. I put my faith in the hope that there would be no way Duchenne could eclipse each and every piece. As this disorder continues to take away all that once seemed so normal from my boys and the life we share, it remains to be seen how many of those pieces will be tarnished by the time it has its course. I wish there was some way to make the boundaries a little clearer, but it seems that with every passing day I’m finding more and more pieces that fall under the abstract gloom of this disease.

I want you to know how much easier the day to day commuting, as well as our trips to Cincinnati and Columbus have been, thanks to your generous gift to Nolan and Jack. Thank you. The van, while robust in its ability to remind us of the changes taking place, does one of many things very well. It gives our family the ability to travel in comfort and with convenience, together. As most of the aspects continue to warp under the strain of life with neuromuscular disease, it's nice to have the simple things that so many folks take for granted, remain intact. We couldn't have done it without your help and the reso-lute work of the Beamer Hughes Foundation. Your efforts render ample tribute to the man that only wish I could have met. The profound effects your family and your foundation continue to bring to those that suffer are divine.

I truly wish this note could be just that, a simple thank you. But as with everything else in my shaken reality, these words and feelings are burdened by a need for help. I am writing today to ask for the foundation's help once again with an unforeseen issue that has resulted from the boy's deterioration. As the decline in mobility progresses, the boys rely more and more on the zero gravity environment of our pool to help even the playing field. With the start of this swimming season, it has become painfully evident that this oasis has been hampered by their lack of ability. Simple entry and exit from the pool has become a discouraging challenge, one that now requires outside assistance to make happen. We are hoping that the foundation would be willing to aid with the purchase of a poolside lift so that Nolan and Jack could use their pool unaided, at will. The expense of recent equipment purchases coupled with the prospect of an upcoming pharmaceutical trial have lead to this appeal and we hope the the Beamer Hughes Foundation will once again bring its “star power” to bear.

Though Nolan and Jack carry the bulk of this weight, we as a family are blessed by the many spirits that serve guidance on this journey. You remind us every day to remain vigilant in our resolve to change the outcome and make neuromuscular disease a thing of the past. God bless you, God bless Beamer, and thank you for lighting the way.

Matthew Willis