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Raising support for Grace: Community comes together to provide mobility dog for 2-year-old

Grace was diagnosed with a genetic disease called Spinal Muscular Atrophy.
Credit: WTHR

INDIANAPOLIS — Two-year-olds Grace and Charlotte Council were what their parents “prayed over, thought about and anticipated.” 

Their mother, Jennifer Council, spent six months attempting in vitro fertilization before getting pregnant with the girls. 

“I wouldn’t trade it for the world,” Jennifer said. 

The twins were named after their maternal and paternal grandmothers.  

Credit: Sarah Jones

Three months after the twins were born, Grace was diagnosed with a genetic disease called Spinal Muscular Atrophy (SMA).  

“It cause muscle weakness throughout the body,” said Jennifer.

“Some people, when we talk to them about this, they associate it with just the inability to walk. But it’s a lot more than that,” said Jennifer’s husband, Brian. “Even breathing for Grace is more difficult. Her ability to swallow certain foods is difficult for her. So we’ve had to be really cautious with all of those things as well, and be really careful."  

The Councils made their home wheelchair-accessible and added an outdoor patio so that Grace would have an outdoor space to play with her family and friends.  

Grace also has two wheelchairs - a manual one and a power chair.  

“The  manual wheelchair is for when she’s in more confined spaces, for shorter distances," Brian said. "And then she needs the power wheelchair anytime she’s going to be out and about for a longer distance where she doesn’t have the muscle strength - she fatigues easily - to be able to wheel herself around in her manual chair." 

The manual wheelchair called the Panthera Micro was donated to the Councils about a year and a half ago.  

“It weights less than 10 pounds, which for Spinal Muscular Atrophy, that’s a really important thing,” said Brian. 

Because the wheelchair is much lighter than most, Grace is still able to move her own chair around amid muscle weakness throughout her body.  

“But along with that comes a pretty big price tag of $5,000 or $6,000, so we were lucky enough to have that chair donated to us and a handful of other families by an organization called Cure SMA,” he said. 

Credit: Jennifer Council

Because the wheelchair is designed specifically for toddlers, Grace’s father said she’s likely to outgrow the manual chair within the next couple years.  

Their health insurance was able to assist them in getting Grace’s first power wheelchair a month ago.  

“The power chair is typically used for about five years, depending on how quickly she grows,” said Brian.  

Grace races alongside her sister in her powerchair and needs the assistance of her mom when going over grass. But there are some things that the powerchair can’t do that a mobility dog can. 

The dog is also trained to get the attention of the parents when necessary.

“Grace sometimes chokes when she’s eating," Jennifer said. "We’re pretty picky about the types of things that she eats, we try to be careful. The dog will alert when she’s choking." 

Jennifer said she also tends to tip over easily and sometimes drops items, so they have pillows behind her.  

“Like when she’s coloring or playing with toys, whatever it is," Brian said. "So the dog will be trained to retrieve anything she drops on the floor and hand it back to her. It’ll be trained to pull her wheelchair if there are rough surfaces or inclines that she’s not able to push herself past." 

The Councils said when they began researching for a service dog, they found that very few available dogs can grow up alongside a toddler. 

“Typically, they have to be eight, nine, 10 years old because the companies want the child to be able to handle the dog on their own” said Brian. "There are these other companies, or organizations, I should say, that will place a dog with a family with a child as young as Grace, with the thought that the parents will be the handlers early on and the child will later on in life." 

Brian said he was able to find only three or four organizations that would place a dog with toddler.  

The cost was between $15,000 and $30,000. 

“To find out there was this really large, out-of-pocket fee, to even get placed and matched up to start the process of getting a service dog for her was a little overwhelming,” said Brian.  

So, the family took to social media.  

“We made a Facebook and GoFundMe and shared our story and instead of having people donate, we thought people would get family photos for their donation,” said Jennifer, who is a professional wedding and family photographer.

In just two weeks, the Councils said they raised about $5,000. But still had another $10,000 to go.  

“I was stressed out about it,” said Brian.  

“(Jennifer) was being my rock, saying it was going to be fine, and then a day or two later, we got that Facebook message,” said Brian. 

That message was from a stranger. 

“All they said to us is they would like to take this off our plate,” said Jennifer. “It’s kind of mind-blowing that somebody that we don’t know would take care of us in such a huge way and bless us (freeing us from) this huge financial burden that we had, and they don’t want anyone to know who they are." 

The Councils said knowing the community came to their aid means so much to them because this mobility dog is going to empower their daughter to maintain her independence as she gets older.  

Grace’s dog is still a puppy and it will take Dulebohn Service Dog some time to train. They are scheduled to meet in the summer of 2021.