New Years Day arrives which ends the holiday season…finally. Collin had been home for two weeks which is always great. Chelsea adores her brother and loves having him home. He is sure to spend time with her especially every morning when he comes into her room to hang out. She just loves being in his presence whether he is on his computer, listening to music or reading with her in bed, which he does so well. While she is not saying much these days, it appears that her mind is full of chatter and she is entertained by her brother and her face is lit with delight. It is always sweet when Collin is home; we miss him so much but know school is where he belongs. I don’t know how this journey will ultimately affect him, his sweet nature and sensitive heart. As he said to me this past year, “You and dad have a daughter, who is dying, but I have a sister who is dying, and I am haunted by that every day.”

As the New Year begins to unfold I look back at what we’ve been through over the past four years and still have difficulty realizing and believing that this is really happening. I look at Chelsea, now 18, and she seems littler and younger than she did at 14 when this hideous journey began.

While she has grown over the past several years, now up to 5’2”, she has lost nearly 20 pounds, her hair has thinned and changed due to medication, her once strong athletic legs can barely hold her up, and she can no longer perform simple functions like brushing her hair or dressing herself. Once a chatterbox, now she can hardly formulate clear enough thoughts to make a sentence. Although I know for certain she is thinking. You can see it in her eyes and facial expression and on occasion she’ll get a few “very appropriate” responses and thoughts across. There are many occasions where she suffers delusion and hallucinations. Some are horrific and terrifying; other times she imagines seeing someone she’s connected to through recent experience or long ago memory. She’ll smile, and light up as if to be greeting them often accompanied with an enthusiastic, ”hi”.

These moments really are more sweet than sad to me. It’s almost as though she’s going through the rolodex of her mind; reliving good fun, sweet memories and friends of long ago. She has no reference to time so while she has been ill, 4 years now, her memories may seem like yesterday that she’s seen these familiar faces. She often calls out for her brother, Collin, forgetting he is away at school but clearly missing him.

I play along with her and interact with her visions, whether that is right or wrong for me to do that, I don’t know. All I know for sure is that if Chelsea is having sweet visions that bring a smile to her face, who am I to take that away? I would much rather encourage fantasies in our lives than admit to her the harsh reality that exists. There is no value in that.

As for me, I am trying to find more value as this year unfolds and I begin to pull myself out of the funk I’ve been in over the last several months. It’s a New Year and time to refocus. While I have felt a great accomplishment, this past year with our website and the fact that we’ve created a sense of belonging and community for our lafora families, I wasn’t sure how to proceed to build on that even more. Being open to any possibility, I allow my mind to rest to see what opportunity may come our way.

Into our lives comes Cheryl, a local professional photographer, who finds Chelsea’s Hope almost by chance while doing research on the internet. Cheryl is struck emotionally by our tragedy and stories but also because she recognizes our name and has connection with many people who have been somehow connected to us. In a selfless act of compassion and with a need to want to help in some way, she reaches out to offer her support to us and Chelsea’s Hope to help raise awareness and aid in our fundraising efforts and offers her talents through the use of her photography.

After several emails and a coffee shop meeting, we lay the groundwork to begin our plan to personally connect with as many lafora families as possible to begin to create “The Faces of Lafora” through photography. What Cheryl has presented us with is a tremendous gift. While the images she creates will be useful in our fundraising efforts, her offer also created the space for us to personally meet, share, connect and bond with other lafora families. Being that lafora is so rare, our families have no one in their same situation, many feel isolated in their pain, alone in their sadness, and lost for information. Cheryl, through her work, has allowed for a window to be open when it seems previously there were only closed doors.

By the time this entry is read, Cheryl and I will have personally experienced the crystal blue of Kris’ eyes as he lay, in a convalescent hospital in Stockton, California. We see the twinkle in those blue eyes as his mother holds the phone so that Kris can hear his brother’s voice.

We interact with DJ in Lemoore, California, as he energetically plays “Rib-it-Ball” with us and see his face light up as he shows off his Nascar poster in his bedroom. While no words come from his lips, he shares beautiful smiles for the camera and receives lots of love from his family.

We shared meals, laughter and tears while being hosted as overnight guests by Adela’s family in Dallas, Texas. It was easy being with them and felt like we were visiting family because of our many previous emails and phone conversations. Although Adela has been compromised by lafora these past 6 years, we were impressed with her intellect, love of movies and quick wit. Her animated personality and radiant smile came to life in front of the camera as she exhibited her modeling for us.

We drove several hours from Memphis, Tennessee, to what seemed to be the middle of nowhere, and were warmly welcomed with open arms by Jan, Jake’s mom, who was amazed that we made the trip. We will never forget the contagious laughter and non-stop smiles and wonderful cheerfulness of Jake, an adorable 17 year old boy, that I am sure Chelsea would have had a crush on, in Malden, Missouri.

We fly to Washington for a day trip to sit peacefully in Kristen’s room with its expanse of windows overlooking a beautiful lake; a serene and vacation-like setting. We are struck by Kristen’s beauty with her long dark hair contrasting her pale flawless skin as she lay stretched out on her bed. There is evidence of a once, bright, and inquisitive girl in photos throughout her room. Kim, Kristen’s mother, shares stories and shows us the different medical equipment used to care for Kristen, now 10 years on this journey and we sense the decade of weariness. This profoundly affects me as it gives me a glimpse of what the future holds for Chelsea.

Cheryl, and her daughter, Hallie take a cross country trip to visit their family in Washington DC and while there, take a few side trips to visit two more lafora families. They travel to Fairhaven, Massachusetts along the eastern shore to experience the biting cold weather but the warm spirit of Matthew, a gentle, ex-football player and snowboarder. Cheryl is struck by the large size of his hospital bed and Hoya lift overhead to assist his parents in moving him from bed to wheelchair. Matt’s room is filled with high school memories and his diploma proudly hangs from the bookshelf. With his clean shaven, handsome face, and bright eyes, Matt mugged for the camera, giving a cute teddy bear look that got everyone laughing and he lit up even more when his grandfather arrived for the photo shoot. Cheryl was reminded by Lisa, Matt’s mom, that no matter how far advanced these young people are in their disease, their essence remains intact and we are so fortunate to witness those moments when it finds its way to us through smiles, laughter, and hugs.

The day after their Massachusetts adventure, Cheryl and Hallie make the four hour drive from Washington DC to Johnstown, Pennsylvania to find 15-year old Jess and her little sister Gillian looking out their family room window anxiously waiting for them. Cheryl immediately senses Jess’s sadness and anger about just wanting to be a regular teenager. Having recently been diagnosed, she’s very aware of her declining abilities. Cheryl notices every wall in their home is covered with family pictures documenting each stage of Jess’ life. Once Cheryl breaks out the camera, Jess, the super model emerges. Smiles and laughter fill the room as one by one each family member joins Jess on her bed for a photo session; even the family dog. Cheryl feels a special connection to Jess and they share lots of hugs before saying goodbye. This was Cheryl’s first glimpse into the heartbreak of the beginning stages of Lafora.

Our last day trip brought me, Cheryl and Hallie to visit Angel, 18, little sister to Kris also from Stockton, CA. Angel, who lives in a residential care facility separate from her brother, also with lafora, was excitedly waiting for us knowing we were taking her to visit Kris. Like Kris, Angel, has crystal blue eyes that twinkle. While we spent time in her room, she showed her animated side as we began our photo shoot all the while sharing, as best she could through interrupted speech, some details of her life and stating how much she missed her mom and brothers. Bringing Angel to the convalescent home to see Kris showed us how much she loved her brother as she affectionately called him “Bubba” as she tried to wake him.

These past several months have left a heartbreaking imprint on my mind as well as Cheryl’s. Not a day goes by that I don’t visualize these children in my mind, each in their different stages of this awful disease that is robbing them of their precious abilities. We realized what a valuable gift we have given to these families but in the giving we have received so much. I feel I have new friends that seem like family, in connecting with those affected by lafora. Through this journey and in accepting what is happening to Chelsea and feeling helpless to change things, it has empowered me to make a difference and that empowerment has allowed me to reach out to the other families effected as best as I can through this website. As Gabi, Adela’s mom, coined me, “A warrior”, I will carry that label proudly. The images Cheryl creates from our experiences in meeting these families will be an important visual in allowing us to raise more awareness and donations to Chelsea’s Hope.

Speaking of raising awareness, my great group of girlfriends have come together to begin the planning for our first fundraiser to be held on May 17th. With these fabulous, talented and well committed friends always supporting me on my journey, they, too, have created a special connection to Chelsea. So with great ambition, many phone calls and meetings, their own busy lives to lead, and the love of friends we once again join together as “Team Chelsea” to make a difference.

With appreciation and love…

Linda