Canton mother: It’s a nightmare: Toddler battles a rare dengenerative disorder
by Michelle Babcock
June 20, 2014 12:45 AM | 8068 views | 0 0 comments | 16 16 recommendations | email to a friend | print
Harper Fry plays with the Fry family’s new kitten. Harper was diagnosed with a condition called metachromatic leukodystrophy, a rare genetic disorder that impacts the nervous system, brain, spinal cord, muscles and sensory cells. <br> Special to the Tribune
Harper Fry plays with the Fry family’s new kitten. Harper was diagnosed with a condition called metachromatic leukodystrophy, a rare genetic disorder that impacts the nervous system, brain, spinal cord, muscles and sensory cells.
Special to the Tribune
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For the past six months, Canton mother Lindsay Fry says she has watched her youngest daughter fade.

Fry and her husband, Lance, began to notice their youngest daughter, Harper, walking and running a “little off” when she was 2-and-a-half years old. The little girl was then diagnosed with mild cerebral palsy.

“Harper was born completely normal,” Fry said. “She developed completely normally, until the age of 2.”

But after the initial diagnosis, Harper began deteriorating, and soon after, she was diagnosed with a degenerative and terminal disorder.

Harper was diagnosed with a condition called metachromatic leukodystrophy, a rare genetic disorder that impacts the nervous system, brain, spinal cord, muscles and sensory cells.

“It’s degenerative. It has no cure,” Fry said. “She will be 4 in July. Most children who are diagnosed with MLD will live to be around 5.”

“It’s a nightmare. This is like your worst nightmare. But we have faith in God, and we believe that each day, we will have what we need,” Fry said. “We’re broken-hearted, we’re devastated. But we have faith that we’ll get through this.”

Fry said travel costs for visiting specialist doctors out of state and the cost of providing special needs equipment for Harper is expensive and it’s not always covered by insurance.

“There’s things we’ve had to buy, like a special needs high chair, and it’s hard to know what our needs are going to be in the future,” Fry said. “We’ll hit a point where we’re going to need a nurse to come in and help Harper.”

Fry said she and her husband face many future costs, from immediate care to the possibility of a burial, unless, Fry said, a miracle happens.

A specialized stroller cost the family $2,500 and a special-needs high chair cost $700, but Fry said it’s worth it to make life a bit easier for Harper and the family.

Fry said right now, her family is trying to make good memories with Harper and their two other daughters.

A friend of the Fry family, Adrienne Slade, started a fundraiser to help the family, with a goal to raise $10,000.

“Lindsay and I met a few years ago,” Slade explained. “We go to the same church, and our kids go to the same school, so we got to be good friends.”

Slade said her daughter is only a few weeks older than Harper and the two are friends.

“Harper’s physical needs are increasing,” Slade said. “All that falls on Lindsay’s shoulders, so the fundraiser started out to raise money to get Harper the specialized things she needs. And so many people wanted to help, so I wanted to coordinate their efforts in one place.”

As of Thursday, the fundraiser “Helping Harper” had raised just more than $3,500, and Fry said she’s overwhelmed by the community’s response.

“The outpouring of the community, so far, has just been amazing,” Fry said. “We have a huge support system through Canton First United Methodist, and we have a lot of family locally, who are supportive.”

Slade said she never wanted the family to go without the financial ability to meet all of Harper’s needs.

“It’s a way for people to help, and I never want them to need something for Harper and not be able to afford to get it for her,” Slade said.

Slade said some of the students at Cherokee Charter Academy, the school where both her and Fry’s children attend, spent the past few weeks selling Rainbow Loom bracelets they made to help raise money for the fundraiser.

“It’s so thoughtful and sweet of them to do that,” she said.

Fry said when Harper was first diagnosed with a stable condition of a mild form of cerebral palsy, she got leg braces and attended weekly therapy. But when her condition continued deteriorating, Fry knew something was wrong.

“She shouldn’t have been getting worse. People with cerebral palsy don’t get worse,” she said. “It was alarming to us … and the doctor suggested we get an MRI for Harper. He called us back that night, just shocked by what it showed.”

Fry said as a parent, it’s been hard to watch her child’s condition get worse.

“Harper has basically gone from a completely normal, healthy 2-year-old to now, almost at 4, she cannot walk. She can’t talk. She can barely sit up. She drools a lot,” Fry explained. “Eating is becoming harder and she’s started to choke. She will soon be on a feeding tube. She will possibly lose her hearing. She will probably lose her eyesight, and she will start having seizures at some point.”

Fry said she and her husband found they were both carriers of the genetic disorder, and each of their three children had a 25 percent chance of being born with the disorder.

Their two older daughters, Lilee, 9, and Hanna, 7, are both healthy and doing well in school at Cherokee Charter Academy.

Fry said her youngest daughter still smiles and enjoys things in life.

Harper loves Minnie Mouse, Fry said, and the family is looking forward to a trip to Florida. They leave Sunday.

“She still knows what’s going on, and the Make a Wish Foundation is sending us to Disney,” Fry said. “Right now, we’re just trying to make life as comfortable and as fun as we possibly can for her and our other two girls.”

Fry said Harper loves silliness, being held by her mom and the family’s new kitten.

Fry said she’s rearranged her life to care for Harper, and said it’s much like caring for an infant again.

Donations can be made to the fundraiser online at www.gofundme.com/8ztcz4. More information about Harper’s story can be found online at www.caringbridge.org/visit/harperfry/mystory.

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