When Janelle Young was pregnant with her first child, she knew something was wrong. When she prayed about it, she says, she heard the clearest answer from God she has ever heard.
There is something wrong with your baby, she says God told her. But you will always have what you need for him.
Caleb Young, Janelle’s son, is 23 and has autism and tetrasomy 18p, a rare chromosomal disorder. He loves the Night at the Museum movies, country music and his sister, Sophia Young. He has always wanted to swim with dolphins, and one day last year, Sophia, 13, decided she wanted to help her big brother achieve that dream.
She learned about the Dolphin Research Center, which offers a camp, the Special Needs Dolphin Pathways Program, tailored to each participant. For the entire family to go – Janelle, dad Kent, Caleb and Sophia, plus an aid to help care for Caleb – it will cost $15,000. That includes travel to and from Grassy Key, Fla., lodging for a week and the program.
Sophia decided to make and sell dolphin sun catchers for $3 each to raise that amount. Her mother opened a savings account for the money raised – there’s a bit more than $100 in there – and every dime goes to getting Caleb and their family to the camp.
This would mark the first family vacation the Youngs, of Roanoke, have taken together.
People with tetrasomy 18p have an extra piece of chromosome 18, and the symptoms vary from case to case. The Genetics Home Reference, a service of the U.S. Library of Medicine, says babies with tetrasomy 18p can have trouble feeding, which makes it difficult to gain weight. Some babies will have breathing problems and jaundice. Those with the disorder can have weak muscle tone, increased muscle tone or stiffness, delaying the development of sitting, crawling and walking.
Those with tetrasomy 18p tend to have low-set ears, a small mouth, a thin upper lip, and a high, arched palate.
They can have seizures, vision problems, ear infections, hearing loss, constipation, scoliosis or heart defects. Boys might be born with undescended testes and other genital problems.
Janelle rattles off some of Caleb’s symptoms: He is missing a muscle across his face near his mouth, and he has small ears. He wears leg braces and his hands are starting to turn in from arthritis. He was born with a hole in his heart. He no longer has heart issues, though there is a heart murmur. His seizures have stopped.
It is difficult to understand Caleb’s speech, but he does have speech – something a doctor once said wouldn’t happen. He can also walk – something else that defied the doctors.
And he is loving. As Janelle discusses her son on their living room couch, Caleb is right next to her, all but on her lap. He wraps his arms around her and pats her cheek, tells her she is beautiful.
Caleb graduated from Homestead High School last year and has lived in a group home with Anthony Wayne Services since he was a teenager. It became too difficult for his parents to care for him, as he needs help with everyday tasks like bathing, Janelle says. He visits his parents every Sunday, and during the week, he works at a food bank.
I sort the food and deliver it, Caleb says.
He’s very good at it, Janelle says.
Yes, I am, Caleb says.
Caleb has always wanted to swim with dolphins, and Sophia decided she wanted to help make her brother’s wish come true.
I love to help people, and I wanted to raise money. (I thought,) what if I started raising money to take him to Florida? she says.
The Special Needs Dolphin Pathways Program sees a variety of special needs, including autism, cerebral palsy and genetic disorders, says Rebekah Reilly, special needs coordinator with the Dolphin Research Center. The center bases each experience on families’ goals: patience, verbal skills, communication, looking someone in the eye when they ask for something.
A lot of times, it’s just as simple as boosting their self-esteem and having fun, Reilly says. Each parent gives us different goals. Each (experience) is tailored to the individual.
Participants spend time in classroom sessions, where they learn how to interact with and signal the dolphin, preparing the child for what will happen in the water, she says.
I want to see his whole body relax in the water, Janelle says. He’s so tense all the time.
The suncatchers Sophia is making and selling are about 6 inches across and made with torn pieces of lavender and light blue tissue paper. Across the body of the dolphin reads, Caleb’s Dream Trip, so people remember what they supported with their purchase, Sophia says.
The money she has raised so far is primarily from family members and friends. Last year, she set up at the Roanoke Farmers Market with a family friend. She started a Facebook page, facebook.com/CalebsDreamTrip, to keep supporters abreast of the fundraiser and let them know how Caleb is doing.
He is like the best big brother ever, Sophia says. We’ve gotten in fights before, but we love each other so much. We hardly ever fight.
It is the day after Christmas as his family chats about Caleb’s disorder, and he is wearing a Snoopy T-shirt. It shows the beagle under the mistletoe with the words, Hey ladies, get in line. He is wearing hot pink Grinch socks, which he stole from his mom.
I never got to wear them, she says, laughing.
Caleb holds on to a few pieces of brightly colored tubes of rubber, which he shakes, making the ends bounce about on his hands. The family calls these tubes shakies, Janelle says. They are rubber strips used to keep sunglasses on a person’s head. The repetitive motion of shaking the shakies helps keep Caleb calm.
I’m your pookie bear, Caleb tells his mother. I love you. I’m a lady’s man.
Sophia is a cheerleader at Emmaus Lutheran School, and Caleb recently attended his first basketball game to watch her cheer, she says.
Though such noise would typically bother Caleb, he stayed for the entire game. At one point, he approached the basketball coach and said, It’s so nice to meet you.
As Janelle tells how well Caleb handled the noise, he says, I handled it. Are you so proud of me? I love you, Mom. You’re beautiful today. I love her.
How to helpWant to buy a dolphin sun catcher from Sophia Young to help send her brother, Caleb, and their family to Florida for a week-long camp? Send the $3 donation, with a note that this is for Caleb’s Dream Trip, to: Bippus State Bank, Attn: Jennifer Hanson, 577 Geiger Drive – Suite A, Roanoke, IN 46783