Robert Daigle - ALS Ice Bucket Challenge
Organized by: Jenny Serratore
At the request of Rob’s AMAZING New Hampshire Baseball League and the WONDERFUL men it consists of, we have established this fundraiser. Rob’s teammates and friends would like to ensure that any and all future medical needs: experimental prescriptions (not covered by insurance), equipment (wheelchairs, bed, lift, specialized vehicle, specialized housing), etc... will be covered. And EVERYONE’S hope is for a CURE. With that, we are overwhelmed by their hearts and have decided that in conjunction with the ALS Ice Bucket Challenge/Every August ‘til a Cure, we’d like to split any funds raised between now and August 31st with ALS TDI, the world’s first and largest nonprofit biotech that is 100% focused on developing treatments for ALS.
In July of 2014, Robert Daigle, the greatest man I've ever met, proposed to me after just 9 months of dating. At last, after 36 years of frogs, I had finally found my Prince. Then a month later, in August of 2014... it started. Rob randomly began dropping his fork... his pen... anything he tried to grip with his left hand. In October/November, when he went down to Fort Myers for his annual 2-week stint of playing ball in the Roy Hobbs World Series, he noticed that though his pitching arm was fine, his left hand and glove were no longer subconsciously meeting the ball. In his 30+ years of playing America’s favorite pastime, he had never missed catching the ball that many times. By January of 2015, things had gotten so bad with his entire arm that I urged him to finally see a Neurologist. He was first diagnosed with having had a stroke or a series of mini strokes. With further testing, he was then diagnosed with MMN (Multifocal Motor Neuropathy). His doctor was sure that it was MMN and that it was absolutely not ALS. Still, we were on a waiting list to see a specialist for a 2nd opinion, but could not be seen for another 2-3 months. After MANY IVIG infusions and an aggressive series of Apheresis treatments, we should have seen an improvement in his immune system (helping to bring life back to his muscles and nerves)… alas, nothing. A couple of weeks after the last Apheresis treatment, Rob started talking funny and this lasted many days. His tongue felt 3x the size, his breathing was impaired and he was choking when eating and drinking. With that, his doctor had him admitted to Lahey Clinic in order to be seen by the Neuro-specialists immediately. They took one look at his history, performed yet another round of extremely painful EMG testing... and knew. My Prince was diagnosed with ALS on April 1st, 2015. What a cruel, cruel joke. But it’s no joke. Immediately, we set up an appointment to be seen by MGH for a 3rd opinion, to which they confirmed our nightmare. We gave ourselves two weeks to cry, mourn and be angry… but from there decided, that to the best of our abilities, we would approach this mountain with grace, hope & love. Since April, Rob has progressed more quickly than we ever would have imagined he would. He no longer has any use of his left hand and arm. The weakness has spread to his legs, his walking is staggered and he’s fallen many times. Now, he’s losing strength and grip in his right hand. Simple tasks are no longer simple. Rolling over in bed takes him a good five minutes and uses every ounce of energy he has left. Buttoning his pants or his shirt is nearly impossible and no longer without my assistance. Stairs are most certainly the enemy and his energy levels are completely used up by late afternoon, daily. Our wedding is this October, so close for me... so far for him... and my hope of all hopes right now is that even if he’s in a wheelchair by then, that it’ll be for energy conservation and that he’ll have just enough strength for our first dance. I ask you all, even if you cannot donate to finding a cure this August, please, if you will… wish for us a memorable first dance as husband and wife… and for him, the best remaining life possible.
Thank you ALL for your continued love and support. Words cannot express how much it means to us. <3 Jenny & Rob