Staying active with India: Local family forced to leave state due to toddler’s rare disease

WASILLA — Blake and Sarah Stuker are in a stressful situation no parent would ever ask for.

“I think that’s an understatement,” Blake said as he picked up India, the younger of their two daughters.

India has an extremely rare genetic disease called Spinocerebellar Ataxia. There are numerous types to this disease and India has type 19. Surrounded by her family in their Wasilla living room with cardboard boxes packed up, she looked around the room with her big blue eyes and smiled with a drooly little grin. She is quick to waddle toward anyone in her path.

“She’s very friendly,” Sarah said.

Typically, toddlers stop drooling at this age but Sarah said that the drool is a part of India’s condition.

“The day we got her diagnosis, I started calling everywhere,” Sarah said.

India received her diagnosis when she was 22 months old. Blake said that she has a vast and perplexing amount of symptoms.

“It’s like having Alzheimer’s, ALS [amyotrophic lateral sclerosis or Lou Gehrig's disease], MS [Multiple sclerosis], and Parkinson’s all wrapped up in one,” Blake said.

Blake said there is no cure or real treatment for India’s condition, only some forms of treatment to address some of the mild symptoms. Sarah said that India typically goes to four different specialists a week. These range from physical therapists to neurologists.

“It was just an accidental discovery that explained everything,” Sarah said.

Prior to India’s diagnosis, her parents were feeling wary about how she was developing. Sarah said that India’s older sister Eilie, who turns 5 in May, essentially hit all her developmental milestones like walking and talking right on time or early but India developed much slower.

Sarah said that India just started walking around 19 months old. India also had trouble moving her head, so much to the point she had a flat spot on her head when she was around six months old.

“She wasn’t rolling around. She was trying to interact with people but not trying to grab for toys and stuff like that,” Sarah said.

India still didn’t walk at 15 months so she began physical therapy. They were eventually referred to a neurologist who diagnosed India on Jan. 21, Martin Luther King Jr. Day.

“Her mutation is completely new,” Sarah said.

To say India’s condition is rare would be putting it lightly. It’s a rare version of an already rare disease. Sarah said that she is the only the second child in history to be recorded with such an early onset. She said that most people with this disease don’t see an onset until they are adults.

Like most toddlers, India likes to explore her surroundings, walking and talking around. Most toddlers are clumsy and talk funny but thanks to her condition, India is extra clumsy and slurs her speech more frequently. India is also experiencing amblyopia in one of her eyes, essentially meaning her brain is not registering that eye as it should so it drifts a little bit. Sarah said that India is going to have eye surgery soon.

“We tried patching it but she wasn’t having it,” Sarah said.

Blake works as in independent contractor while Sarah takes care of the kids. He started Stuker Services a year ago. Sarah said that just as the family was getting some momentum built up, they got the diagnosis. Now they have to leave state to stay closer to the appropriate care India needs.

They are moving to Idaho since Blake has family there and they will have close access to the various states like Washington for appointments. The Stuker family is part of an ever growing number of Alaskan families that have had to either travel frequently or relocate to the Lower 48 due to lack of medical resources.

“There’s a lot of kids who go without help because there’s no one to help them,” Sarah said.

Blake said that he plans to keep going as an independent contractor down in Idaho but if he finds himself unable to do that, he will start working with some other contractor. He said that he came up with Eilie’s name wanting to make the most unique and pretty sounding name possible. He said that Sarah named India, not after the country but by how pretty it sounds.

“Pretty girl,” Blake said softly as India meandered around the living room.

India likes to jump around, sing and cuddle her pets, especially their black cat named Pocus.

“That’s her spirit animal,” Blake said with a laugh.

Sarah said that India has made a lot of improvement. She said that she moves around a lot better and will be able to take her first steps outside soon and get the real Easter experience. India is blonde like her sister who likes to dance around the house with her little shadow not far behind.

“Eilie is big helper. She loves her sister,” Blake said.

Sarah said that there is no real treatment for India aside from physical therapy and keeping her active. They were not given a life expectancy and they are just doing everything they can to keep her active and find as much help as they can. The future is a mystery.

“We have no idea what to expect,” Sarah said.

The Stuker family is basically started fresh when they move down to the Lower 48. Blake said that whatever they can’t sell they are giving away. They leave on March 15.

They started a GoFundMe page to help them relocate and start their new life, asking for $10,000. So far they have received $6,535, over halfway to their goal. Sarah said that she hates asking for anything let alone for so much from so many strangers but they don’t know what else to do.

“Having to ask for help is really difficult,” Sarah said. “We were getting finally settled in, starting a business then it all just kind of unraveled.”

The situation is of course, not ideal but it’s caused the Stuker family to hold onto each other even tighter than ever before.

“It’s definitely brought us closer together,” Blake said.

Anyone wishing to donate to India’s GoFundMe page can do so by visiting: www.gofundme.com/indias-relocation-for-treatment

Anyone who wants to be a part of her journey can follow her Facebook page which her parents update frequently. The link is: https://m.facebook.com/Indias-Spinocerebellar-Ataxia-journey-2087081871412280/