Panama City, Panama
Stem Cell Therapy Subjects Dylan and Tessa Hancock with their father, Jeremy
ASHLAND — Three-year-old twins with cerebral palsy are making life adventurous, challenging and bittersweet for the Hancock family.
“They’re happy kids but it definitely makes it more difficult because as a parent you want them to have every opportunity that every other child has,” said mother Carrie Hancock. “It’s hard, but we’re handling it the best we can.”
Because they were born 10 weeks premature, both children suffered developmental delays.
By the time Tessa and Dylan were 20 months old, Tessa had been diagnosed with cerebral palsy, a permanent disorder that affects movement and posture. At that time, parents Carrie and Jeremy were getting ready to take their daughter overseas for a stem cell transplant, a procedure that would allow Tessa to live a better, less physically restricted life.
The results were remarkable…
In the midst of their planning, the family was soon faced with another obstacle. That January, Dylan also was diagnosed with cerebral palsy.
“What do you do? They’re your babies. You just go with it and do what you think is best,” Carrie said. “Before, we were always told that he just had developmental delays, but as much as you hated to hear it, it was almost a blessing because we were paying out of pocket for him because he hadn’t been officially diagnosed.
“That’s the silver lining I guess and now we’re able to get him the help he needs.”
The Ashland family ended up taking Tessa to Panama City, Panama, where she had her first round of stem cell treatments in 2009.
“She did really well and had a lot of improvement with her vision,” Carrie said. “Her tone in her hand had decreased and she wasn’t fisting all the time. When we went back in July, we took both the kids.”
The results were remarkable.
“As soon as we took him, he was like a whole other kid,” Carrie said of Dylan. “He was babbling and it helped him in so many different ways. He also just walked independently a couple months ago. For Tessa, it made her stronger. She was already smart and attentive.”
Today the twins attend therapy sessions at MedCentral Pediatric Therapy one day a week and preschool at Tri-County Preschool four days a week. They receive occupational, speech and physical therapy.
“A typical day for us includes them going to school a little after 8 and they’re picked up a little after 11,” Carrie said. “After we get them home and fed, Tessa goes down for a nap and then Dylan stays awake and I get alone time with him, which is nice. We work on walking and sitting up with them, but try to incorporate it into their play. We try to make it a fun time.”
The family takes the twins on outings by stroller and enjoy their play time together, but each day can be daunting.
“The biggest difference is the physical challenge of dressing and feeding. Tessa is in the process of being potty trained, but Dylan doesn’t want to yet,” Carrie said. “She can’t feed herself and we’re still changing diapers at age 3.
“Dylan’s not walking. If you ask him to pick up something, he doesn’t understand. It’s challenging.”
Recently, Dan and Stephanie Kreisher, of Ontario, held their third fundraiser for the family. Jeremy was on Dan’s 1994 state championship baseball team at Ontario High School.
The Kreishers and friends raised $1,400 for the Hancocks, along with providing them two iPads for Tessa and Dylan after learning the electronics would help their communication skills. The iPads were sponsored by Elite Excavating and Zara Construction.
“We have so much and are so fortunate that we wanted to help others,” Dan said. “Jeremy and Carrie are such positive people. They’re the happiest parents, just very admirable people.”
The feeling was mutual.
“I can’t say enough about Dan and Stephanie. The iPads are huge for us. We’re in the process of getting different communication devices to help with fine motor skills,” Carrie said. “They use them in school and it’s nice to be able to incorporate what they’re learning at home. Life isn’t easy, but we are very blessed.
“The best way to describe our family is that we’re taking the scenic route. We’re taking the back roads. We’ll get them there, but it just might take a little longer.”
Visit Emmas blog at www.EmmasHopeBook.com
Emma playing ‘wonder ball’ at the pool with her friends.
So a quick review… Emma has hit so many milestones in the past year it is difficult to say one is more significant than another. My immediate thought was the most important thing in the past year has been that Emma is learning to read and write (more on that later) and while that is certainly an incredible achievement, when I consider that she is also completely toilet trained, even during the night, that too seems equally significant. I know of families with autistic children – now in their teens – who wear a diaper to bed, with no end in sight. The endless changing of sheets each morning is something I am grateful not to be confronted with. In addition, Emma use to wake up in the middle of the night, often more than once, leaving all of us exhausted to the point of hallucinating. Until we had Emma I had never known exhaustion such as that – to be woken and kept up for hours at a time, only to then face a full day of work where you must function, make decisions and not fall asleep during meetings, is nothing short of surreal. Emma rarely wakes us these days, though she did keep her brother up last night. Poor Nic was showing all the signs of exhaustion we have come to know so well. We will speak with Emma, (which is another milestone) and remind her that she cannot do this.
Emma is speaking in longer, more coherent and increasingly complex sentences. She is expressing herself in more sophisticated ways and is showing genuine empathy for others. She is also initiating more. She has formed friendships with specific children at her school, requests to see her cousins, is clearly upset when told they are not available to come over. Emma seeks out our company, often requesting that one of us join her in her room to watch a movie with her on her computer or play specific games with her. While staying in Aspen with my mother, Emma approached her Granma and said, “Granma can’t snap her fingers. Granma hurt.” She then gently patted my mother’s arthritic fingers.
“No my fingers can’t do that any more,” my mother said, showing Emma her arthritic fingers.
Emma stared at them for a moment and then reached over and tried to snap them. We heard my mother’s knuckles crack as Emma did her best to assist in helping my mother snap her fingers.
“Oh no!” I said, looking over at my mother with concern. ”Are you alright?”
My mother was laughing so hard she couldn’t speak and simply nodded her head. Emma looked on with a grin, trying over and over again to snap her Granma’s fingers. It was a wonderful moment between my mother, whose knuckles kept cracking, much to Emma’s delight and Emma.
The next morning my mother entered the kitchen and said, “Good morning Emmy!”
To which Emma responded, “Good morning Grammy!”
To date we have taken Emma to Central America for stem cell treatments three times now. We have not decided whether we will return for a fourth treatment in the next few months until we have some blood work done to measure her cytokines.
Yesterday as I worked with Emma on her literacy program I handed Emma an index card which said, “the man”. I had laid out a toy plane, a truck, a man and a kid on the table. I handed Emma the index card and said, “Give me this one.”
Without hesitation Emma picked up the toy man and handed him to me. These are the moments, moments I could not allow myself to wish for a year ago, that take my breath away.
Emma is progressing beyond my wildest dreams.
