Nathaniel’s Hope
A vital resource for families, born of the special needs of one little boy and his determined parents
When the world says “Give up”, Hope whispers: “Try it one more time.” ~Anonymous
By the time Marie Kuch was 28 weeks pregnant, she was retaining a lot of fluid. She knew something wasn’t right. A month later, on June 6, 1997, she ended up in Arnold Palmer Hospital facing an emergency C-section. “We both almost died during delivery,” says Marie. When her son Nathaniel was born, his Apgar score was 3 out of a possible 10 and he was diagnosed with multiple birth anomalies, including duodenal atresia and craniosynostosis, the latter a condition in which his skull plates had fused prematurely, crowding his brain. He had to be intubated, and thus began a three month journey in the hospital fighting for his life. “I don’t think you can fully anticipate the roller coaster ride of ups and downs that is part of everyday life with a special needs child. It was overwhelming.”
At the time, Marie and her husband Tim had a 5 and a 3-year-old. Managing life was a challenge. “We were in survival mode,” Tim notes. “But we were fortunate. We had what I call the five “F”s: Faith, Family, Friends, and Financial Flexibility. Even so, we could barely make it. We wondered what it was like for families with only one or two “F”s.”
The Birth of Nathaniel’s Hope
Nathaniel had three surgeries on his skull in the first years of his life. Ultimately, he developed bacterial pneumonia and was in ICU for ten days. The doctors were unable to get him off the ventilator.
“One day, we came into Nathaniel’s room and found a nurse weeping over our son,” says Marie. “‘There’s something about your boy,’ she said and asked if she could pray for him. Her prayer was that Nathaniel’s purpose in life would be fulfilled.” The heart stricken parents were puzzled by the prayer, but a week after Nathaniel passed away in November of 2001 at the tender age of 4 1/2 years, they realized it wasn’t the end, but rather the beginning. Instead of asking why, they asked what for. “Our ‘what for’ was finding a way to help other families cope. That’s how Nathaniel’s Hope began.”
Nathaniel’s Hope was founded in 2002 to meet the needs of kids with special needs (VIP Kids) and their families. VIP Kids are those with any physical, cognitive, medical, or hidden disability, chronic or life-threatening illness, or those who are medically fragile. The two most recognized programs that have evolved from this multi-faceted organization are Buddy Break and the Make ‘em Smile event. Buddy Break was created to provide respite care for families who had little or no support available and give them a break when they need it the most. Make ‘m Smile originated from the Kuck’s desire to commemorate Nathaniel’s June 6th birthday by continuing to celebrate his life while sharing joy with other kids with special needs. One of the unique features of this annual event is the “Buddy Stroll” which builds lasting relationships between the community, the VIP kids, and their families as they stroll around Lake Eola with their volunteer buddies.
Programs like these have been a godsend to parents with VIP kids. With three VIP kids, Matt and Diane Hayes were thrilled when they found Nathaniel’s Hope. Twenty year old Meghan has Down syndrome, and Molly, 17, and Maddie 15, are autistic. The girls, Matt’s biological daughters who were adopted by Diane, needed constant supervision. “There was never time for just my husband and me, no time for the girls to make friends, no outside life,” Diane says. The simplest things in life were a challenge…going to the grocery store without a meltdown, getting a haircut, or taking a leisurely shower without worrying that the girls might hurt themselves or leave the house. Then they learned about the Buddy Break program. “Suddenly, we had this three-hour break, once a month, to go shopping and not have a situation arise. I could take a nice shower worry-free, or walk the dog by myself. Best of all, each girl had her own buddy who would give her undivided attention and let her just have fun. Buddy Break has made our lives so much better.”
Rose Mary and David Lumm agree that Nathaniel’s Hope has been a true blessing for their family. After 8 years of infertility, Ryan
was born and was soon followed by twins, Andrew and Katelyn. Life changed dramatically when the reality of coping with Andrew’s needs began to unfold. Andrew was born with spina bifida and hydrocephalus. “We now had three children in diapers under three years of age,” says Rose Mary. The first three years were a blur, filled with 12 surgeries for Andrew, now 7, and the morning routine of dealing with his time-consuming medical needs, getting him dressed, and getting him into his brace. “Buddy Break was a little slice of heaven. It’s a place where we know our children will have a great time and be taken care of. The individualized attention is important for Anrdew’s siblings, as well. They can’t wait to go and see their Buddies.”
The 10th annual Make‘em Smile event, scheduled for June 2 at Lake Eola will celebrate Nathaniel’s meaningful years and what has grown from his presence on earth. “This grassroots event began with about 600 people and has grown to over 10,000 attendees,” says Marie. “We want to show the community that VIP Kids are the same as all kids…they need to have friends, they need to be loved, and they want to have fun.”
Nathaniel’s Hope
Marie Kuck
Executive Director
www.NathanielsHope.org
407-857-8224
10th Annual Make ‘em Smile
June 2, 2012
Lake Eola
101 Rosalind Ave.
Orlando FL 32801
Time: 7:30 am to 1 pm
