Melody Matthews’ first few days have been difficult.

At less than a month old, the newborn’s legs are bound in casts, her arms in splints.

She endures pain as those casts are changed weekly, healthcare workers massaging her kneecaps back into place

“I would take all her pain in a heartbeat if I could,” said Amber VanDenBerge, the tiny girl’s mother.

Melody has amyoplasia, a type of arthrogryposis, meaning she can’t move her limbs as well because her joints didn’t develop in utero.

“My family doctor … when I took her in the first time, they had to look it up,” VanDenBerge, 20, said. “It’s very rare.”

Melody has club feet and dislocated kneecaps. When she was born Aug. 16, her feet swung up behind her ears, her arms were rigid.

Her family had no idea what was coming.

VanDenBerge has an ultrasound that she now realizes shows the youngster’s feet above her head, but there was never any advance warning from the obstetrician, she said.

“It was a big shock.”

But, she said, it could be worse.

More severe forms of arthrogryposis can include spinal deformities, she said.

Meanwhile, little Melody has been making progress.

“She’s starting to be able to get a little bit of bend in her elbows and her wrists are moving,” her mom said. “She’s actually started to squeeze a little.”

That’s with physiotherapy twice weekly, and meetings with a neurologist, orthopedic surgeon, and a geneticist. A nurse and dietitian also visits the Sarnia family every week.

It’s unclear now if Melody will ever be able to move her arms well enough to feed herself, or her legs well enough to walk, VanDenBerge said.

She won’t ever have full mobility, she said.

Melody’s parents stretch their firstborn’s little limbs up to five times a day to help. Doctors plan to build up her muscles when she’s a bit older, VanDenBerge said.

Devices to help her walk could also be in the cards, VanDenBerge said.

To that end, the family is trying to raise money to help with those costs and of driving to London every week. They’re hoping to buy a better car.

They’re also on the hook for splints and casts, VanDenBerge said, noting those aren’t covered by OHIP.

A gofundme.com page for the family lists a goal of $15,000.

“But anything helps,” said VanDenBerge.

Her mother-in-law Patty Matthews has been heading fundraising initiatives for ‘Little Miss Melody,’ and recently brought in about $3,000 with a fundraiser involving family and friends.

The family has also been using the Ronald McDonald House in London.

“We have really great family support,” said VanDenBerge.

“I don’t know what I’d do without them,” she said.

For more information, or to donate, visit gofundme.com/miss-melody or Little Miss Melody on Facebook.

tyler.kula@sunmedia.ca