Funds being raised for treatment of rare diseaseAugust 30, 2019
By LEANN BURKE
DALE — For the last five years, Jeff and Kassy Dalton of Dale have wondered why their youngest child, Kynleigh, 5, suffered from a list of medical issues. About a month ago, the couple got their answer: syringomyelia.
Syringomyelia is a rare spinal condition that involves a fluid-filled cavity forming within the spinal cord.
While the diagnosis brought some peace of mind to the Daltons — they finally had a reason for Kynleigh’s health issues — it’s also brought new stressors.
For treatment, Kynleigh sees three specialists in Indianapolis and two in Evansville, leading to a lot of travel costs and time off work for Kassy, who works at Santa Claus Family Medicine. Jeff is a stay-at-home dad.
To help cover the costs, the family is selling #TEAMDALTON bracelets for $3. The bracelets are black bands with #TEAMDALTON written on them in pink lettering.
The bracelets are available at Soup-N-Such Bistro in Ferdinand, Hoosier Land Pizza & Wings in Santa Claus, Town & Country Hardware in Chrisney and Fisher Auto Parts in Rockport. They can also be bought through the family by emailing Kassy at firstname.lastname@example.org. Donations and orders can also be made through PayPal at paypal.me/daltonfamily6.
Kassy and Jeff said the bracelets have been a hit so far, and the community has come together to support the family through monetary donations, as well as donations of toys and coloring books for Kynleigh during hospital stays. They’re very grateful.
“All of this just hit us,” Kassy said.
The family is not new to dealing with medical issues. Kynleigh’s siblings — Kyndrid, 15, John, 12, and Kyra, 11— all have or have had medical issues. It’s led to some hectic days for the Dalton family. One of those hectic days led to Kynleigh’s syringomyelia diagnosis. Kynleigh was having another seizure, so her parents took her to the hospital. There, doctors decided to take an MRI of her brain.
“They said her brain was OK, but they found something on her spine,” Kassy recalled.
The doctors then did an MRI on Kynleigh’s spine and made the diagnosis.
It’s uncommon for a child to be diagnosed with syringomyelia. Usually it develops in adults who have experienced some kind of physical trauma. When kids are diagnosed, it’s usually congenital, Kassy said. That’s the case with Kynleigh.
For Kynleigh, the syringomyelia has led to a variety of other medical complications, such as seizures, body pain, migraines, trouble walking, speech problems and cognitive delays.
“It affects your whole body, depending on where it is,” Kassy said. “Hers is on her whole spine.”
The side effects mean the family has to take it day by day. Some days, Kynleigh is in so much pain that she lays on the couch all day. On those days, Kassy said, she tells her parents that she’s “sleepy” or “dizzy,” trying to express her symptoms with the vocabulary she has. Those days are spent on the couch with the family’s pets, two dogs and three cats. The animals are a source of comfort for Kynleigh. Well, all except one cat, Houdini.
“That one’s grouchy,” Kynleigh said, pointing at the black cat with brown patches.
Other days, Kynleigh is your normal 5-year-old. She likes unicorns, princesses, mermaids and getting her dogs to do tricks. On Thursday morning, she was eager to show off Rocky’s paw-shaking skills.
“Usually she’s all over the house playing with the animals,” Jeff said.
When Kynleigh is having a good day, people wouldn’t even know she has any medical problems.
Kassy said she’s hoping the family’s experience with syringomyelia can bring more awareness to the disease and to other invisible disabilities.
“Just because somebody looks fine,” Kassy said, “doesn’t mean they are.”
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