It is hard to believe that almost a year has passed since we received Jess’s Lafora diagnosis. I’m not going to lie and say everything’s Ok, because it’s not. It has been the most gut-wrenching, heart tugging year on record for our entire family. I have probably cried more in the past year than in my 40 prior combined. It seems that every day brings another round of unsettled emotions. We pretend everything is OK, and I guess from the outside it looks that way, but knowing Jess has this God awful disease is never far from the surface. It affects EVERYTHING.

On the flip side, there has been a lot of good as well. We have had overwhelming support from family, friends, our community and countless total strangers. My faith in the inherent goodness of human nature has been renewed. I have made lifelong friends through the Chelsea’s Hope family…they are my lifelines and I don’t know what I would have done had it not been for Linda and Barb pulling me up from the depths. I count becoming a member of Chelsea’s Hope board among my proudest moments. I have also enjoyed sharing stories with some of the other Lafora parents, all amazing human beings and among the very few who can truly understand our daily challenges. Nearly everyone who hears Jess’s story is compelled to act. I’d like to share some of the better moments from 2009.

May 2009: Faculty, staff, students and administration of the Ferndale Area School District (GO YELLOW JACKETS!) came together to raise funds. At the elementary’s music festival “Fernstock”, led by good friend and fellow teacher Lori Byer and PTO member Belinda Penrod, volunteers sold paper butterflies. Along with donations from everyone, they raised $1000.00. The Ferndale Football Boosters sold rubber wristbands imprinted with “Jess’s Army” at their concession stand and during games. Two senior football players held a skills camp and donated the proceeds. And Susan Layton, the Ferndale PSEA President, raised an astonishing $3000.00 in just over an hour at the regional conference in Pittsburgh just by simply telling Jess’s story and asking for help. We could not ask for better people to have on our side. We are proud to be YELLOW JACKETS through and through! My employer, Grane Hospice, worked with me to create a weekend position so I am able to stay home during the week with Jess.

June 2009: Make-a-Wish granted Jess the beach vacation of a lifetime. We chose to go Myrtle Beach, South Carolina. Make-a-Wish left not a single detail to chance. It was AMAZING…from our ocean-front 3 bedroom condo to tickets to the coolest attractions, Jess and our whole family made wonderful memories that will last forever.

June 2009: I met Jamie Eckenrod, a senior nursing student at my alma mater, Conemaugh School of Nursing, through a friend of a friend on Facebook. Jamie was so touched by Jess’s story she took the time to organize a huge fundraiser that raised $1500.00. In a matter of only 2 weeks, she rallied fellow nursing students, faculty and family to put on bake sale and raffle during Johnstown’s “Thunder in the Valley” event. Jamie and the other nursing students continue to help out in any way they can.

Summer 2009: As news of Jess’s diagnosis spreads, we began to receive donations for Chelsea’s Hope from all over the country. Jess’s “Papa Joe“ (my stepfather), put the word and a challenge out to other members of the Pittsburgh Pirates message board. We continue to receive donations from these fine folks, and the best we can figure, have received nearly $3000.00 in donations. I would also like to give a big thanks to message board member “Outlaw” John Schell. Outlaw’s whole family, who live in northwestern PA, got involved by painting the hood of their racecar with the Chelsea’s Hope logo as well as distributing flyers, creating awareness and raising funds for our cause. Interim Healthcare Pittsburgh also donated $1000.00 to Dr. Berge Minassian and my mom’s coworkers at Interim are always ready to lend a hand with our fundraising.

September 2009: We held our first “official” fundraiser for Chelsea’s Hope, a basket party. Friends, family and businesses donated nearly 100 beautiful gift baskets with varying items which were raffled off. We sold 25 chances for $10.00 and had additional chances on things like lottery tickets, Pittsburgh Steelers tickets, and a hockey puck signed by the Stanley Cup winning Pittsburgh Penguins. Again, everything was donated, including the firehall where it was held and refreshments. All said and told, we raised over $8000.00 and more importantly, awareness. The following day we had newspaper articles in 2 of our local papers as well as a TV story.

October 2009: Jess turned “Sweet 16“. We had a huge party for her that was attended by nearly 100 friends and family. Jess danced the night away and had an awesome time. In lieu of gifts, we asked for donations to Chelsea’s Hope and managed to raise another $1000.00. Our good friends Danielle and Darren Cimba held a Halloween costume party and helped us raise money to remodel our bathroom to make it handicap accessible. Darren also rallied his fellow UPS workers and made Chelsea’s Hope their United Way charity of choice…made possible by the designation of Chelsea’s Hope as a non-profit corporation!

November and December 2009: We continued to spread the word about Chelsea’s Hope and began to make contacts throughout the country. My sister Megan held her own basket party in Morgantown, WV. Even though basket parties are less known in that area, Megan managed to raise nearly $1500.00. Jess’s “PeePaw”, special family friend Tom Blankenship put out a call for help to his fellow Savage Industries coworkers. Salt Lake city-based Savage has operations throughout the US and Canada, and employees everywhere are doing what they can to help us raise funds and awareness, as well as make Jess feel loved and special. To date, Savage employees have raised over $13,000.00. There have been bake sales, bracelet sales and collection tins across the country. The Mark Kilgore family in Texas continues to send Jess little gifts and letters, which she loves getting. Mark’s mother-in-law Penny from New Mexico sent Jess a doll she dearly loves. The band “Little Feat” put a link to Chelsea’s Hope on their website. Sadly, Jess lost her Grandpa George Ambroe on November 21st…she now calls him her special angel and says he’s telling his jokes in Heaven.

As we move forward in our journey, times are uncertain. Hope is sometimes fleeting, because, as her mother, I have good and bad days which mirror hers. On good days, Jess is seizure free and is relatively uninhibited in her thinking. She is happy and jovial and is able to hold a conversation. On good days she can feed herself and get dressed and maybe text the few friends that still come around. On good days, we are able to relax a bit and exhale and dream of a future without Lafora. But on bad days, it’s really bad. On bad days, Jess is like a toddler. On bad days, she has uncontrollable myoclonus and drop seizures. On bad days, Jess has to be fed, dressed, bathed and coddled like a baby. On bad days, her 10 year old sister cries because she “misses her Sissy” and can’t stand to watch her seize. On bad days, Jess stays in bed all day and asks if she is dying.

She literally has a toe in both worlds right now. She still tries to be what she thinks a typical 16 year old should be which at times just rips my heart out. She is currently studying her PA driver’s manual, and her lack of understanding of simple vocabulary is painful. “What do the brakes do, Mommy?” she asks. Still, we sit and study it and as she muddles through it, I silently pray that someday she will actually take the driver’s test. I do a lot of praying…for Jess, for Chelsea, for all of us who have been and still are fighting this horrible disease.

Jess and Michele on Christmas day		Left to right: Grandma Cam, Grandpa John, Mimi and Papa Joe surround Jess on Christmas Eve		Jess and sister Gillian on Gillian’s 10th birthday
Jess and friends Ashlee, Gabby and Haleedance the night away at Jess’s birthday		Jess and friends at her party