Our beautiful daughter, Delaney Lynn, was born on March 20, 2003. Delaney’s development was normal or above normal until about the age of 4 ½. This quote, “It’s the little things that make life BIG,” describes Delaney perfectly. It didn’t take much to make Delaney happy. Some of Delaney’s favorite things were: a trip to the mall or the local bookstore, Sheetz for a Slushee, Rita’s Ice for a mango gelati, a fudge stuffed cookie at Dairy Queen, or dinner at Chic-fil-A. Delaney LOVED food!!!! She also enjoyed going to the local county fair each summer. She loved spending time at the barn and enjoyed riding her favorite horse, Foalie. Delaney loved school, riding the bus, and listening to her iPod. Delaney loved our yearly trips to the beach. She enjoyed swimming and boogie boarding in the ocean, looking for seashells and building sand castles.
Delaney loved music, and on the right day at the right time she would sing to us Taylor Swift, High School Musical, One Direction and anything else she loved. The singing was loud, slightly off-key, but sung from her heart.
At 4 ½, it was like Delaney had been struck with a bolt of lightning and the slow downward spiral began. OCD, anxiety, depression, insomnia and vision issues were the initial symptoms. Delaney soon began to have learning difficulties and social problems with her friends and classmates. Her coordination decreased, behavior and sleep became more problematic and she struggled both at home and school. Right before our eyes we watched our child slowly being robbed of her life.
We spent many years searching for an answer to all of the declines. Finally after extensive genetic testing, Delaney was diagnosed with juvenile Batten disease on June 9th, 2015. We were devastated and had so many unanswered questions. How will we handle the decline and eventual loss of our daughter? How will we handle all the medical needs, accessibility needs in our tiny, older home? How will we transport her to the places she needs to go once she is wheelchair bound? How will we care for her when she no longer is able to attend school? The questions seemed endless. We put our trust in God and prayed for wisdom, guidance and answers from Him. Although it wasn’t always easy, God provided and has taken care of our needs in ways that only He can. “We are blessed”.
On January 21, 2019, Delaney lost her battle with juvenile Batten disease. Through Delaney’s illness and struggles we have seen so much love, unity and compassion in many different ways. We have seen God’s love through the kindness that people have extended to our family. We have seen God unifying our community as people have rallied around our family during Delaney’s illness, her passing and first birthday in Heaven. We have seen God’s compassion in all those who have prayed and supported us in so many incredible ways.
God has a purpose for everyone He places on earth. We have often wondered why God put Delaney on this earth for only 15 years. Why did she suffer so much, and why was she taken away so early? We won’t know the answer for sure until we get to Heaven, but we feel Delaney’s purpose was to remind us all how we should live our lives each day. We need to love unconditionally, strengthen each other through our trials and troubles and show compassion to those around us.
Delaney's Wish to See One Direction Comes TrueThe Make a Wish Foundation granted Delaney's wish to meet One Direction. The family flew to Milwaukee, WI, where they met the boy band, visited the zoo, and dined at Dave and Busters. "It was an absolutely amazing trip," says Delaney's Mom.
Delaney Supports Her Dear Friend and Miss West Virginia 2015Soon after being crowned Miss West Virginia 2015, Chelsea Malone met with Delaney and her family, and they all became fast friends. Delaney was invited by Chelsea to attend the 2016 Miss West Virginia Pageant Ceremony at which time Chelsea passed on her crown to this year's winner.
Delaney Becomes a Grand ChampionDelaney's love of riding horses was no secret to her friends and family, as was her dream of winning Grand Champion at a horse show. Delaney's determination, together with the support of her family and riding instructor, Kina Davis, transformed that dream into a reality.
Ridgeley Rams Dance for DelaneyDelaney sang and danced alongside the Ridgeley Rams football team and cheerleaders, who organized the dance fundraiser in her honor.
Delaney Receives Rare Honor from WVU MascotWhile visiting Delaney's school, the West Virginia University mascot, the Mountaineer, surprised Delaney when he placed his trademark coonskin hat on her head. As huge WVU fans, Delaney and her family were tickled by the experience.
Christmas Caroling in CarpendaleDelaney's family joined by friends saddled up on nearly 15 horses—courtesy of Delaney's horse instructor—to spread Christmas cheer in the small town of Carpendale.
Applebee's Flapjack FundraiserThank you to Delaney's Dream team for organizing the 2018 Applebee's Flapjack Fundraiser, and thank you to all those who supported the event. Content
Christmas Tree LightingAt the invitation of the Carpendale Mayor, Casey Lambert, Delaney fulfilled the time-honored tradition of lighting the town's Christmas tree.
Frankfort Falcon Wrestling Team Honors Delaney's MemoryThe Frankfort Falcon Wrestling Team wore teal socks to their match on Jan. 23 to honor Delaney's memory and raise awareness of Batten Disease.
Balloon Release in Memory of DelaneyFamily and friends gathered to celebrate and release balloons on what would have been Delaney's 16th birthday.
Beyond Batten Disease Foundation was founded in 2008 to eradicate juvenile Batten disease by raising awareness and funds for medical research. Beyond Batten’s strategy brings together other affected families to connect communities and resources to achieve the goal. Delaney’s Dream is partnering with BBDF to find a cure for juvenile Batten disease so that we no longer lose children, like Delaney, to this disease.
Delaney’s Dream has a raised a total of:
|Holy Cross Methodist Church||Supporting Delaney’s Dream|
|Kandi Resh||Supporting Delaney’s Dream|
|Connie Milligan||Supporting Delaney’s Dream|
|Michele Martz||Supporting Delaney’s Dream|
|Beth Bodnar||Supporting Delaney’s Dream|
|Murtaza Amir||Supporting Delaney’s Dream|
|West Side Elementary School||Supporting Delaney’s Dream|
|Ann Getty||Supporting Delaney’s Dream|
|Beall Elementary School||Supporting Delaney’s Dream|
|Janet Mickey||Supporting Delaney’s Dream|
|Old Furnace Church of the Brethren||From Janet Pyles, Ed and Linda Weaver, Betty Spiggle for Hymn Sing|
|Brian Moreland||Supporting Delaney’s Dream|
|David Whitacre||Supporting Delaney’s Dream|
|Gregory Johnson||Supporting Delaney’s Dream|
|Joseph Hall||Supporting Delaney’s Dream|
|David Cox||Supporting Delaney’s Dream|
|Cheryl Helmstetter||Supporting Delaney’s Dream|
|Mark Kinsman||Supporting Delaney’s Dream|
|St. Johns Evangelical Lutheran Church||Supporting Delaney’s Dream|
|Mia Cross||Supporting Delaney’s Dream|
|Megan Ganoe||Supporting Delaney’s Dream|
|Stuart Sommers||Supporting Delaney’s Dream|
|Shannon Eberly||Supporting Delaney’s Dream|
|John Williams||Supporting Delaney’s Dream|
|Bruce Hanna||Supporting Delaney’s Dream|
|Old Furnace Church of the Brethern||Supporting Delaney’s Dream|
|John D. Griffith||Supporting Delaney’s Dream|
|Charles Hiett||Supporting Delaney’s Dream|
|Neal Riemenschneider||Supporting Delaney’s Dream|
|James Jenkins||Supporting Delaney’s Dream|
|Ronald Moomaw||Supporting Delaney’s Dream|
|Mark Liller||Supporting Delaney’s Dream|
|Jennifer Hay||Supporting Delaney’s Dream|
|Amy Cowgill||Supporting Delaney’s Dream|
|Sara Milliron||Supporting Delaney’s Dream|
|Hugh Felton||Supporting Delaney’s Dream|
|Kristy Rogan||Supporting Delaney’s Dream|
|David Bingham||Supporting Delaney’s Dream|
|Frankfort Athletic Booster Club||Supporting Delaney’s Dream|
|Suzie Triplett||Supporting Delaney’s Dream|
|John Dyson||Supporting Delaney’s Dream|
|Melissa Williams||Supporting Delaney’s Dream|
|John Williams||Supporting Delaney’s Dream|