Jane’s Journey: Genetic condition doesn’t stop this 2-year-old, who is ‘ready, set, go’ – Grand Forks Herald

Family and friends tried to encourage parents Megan and Bryant Comfort that their baby girl would be alright, but they soon learned that Jane had Spinal Muscular Atrophy. The condition is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement, according to the Muscular Dystrophy Association.

What that meant for Jane was that she was essentially paralyzed by the time she was three months old. It caused her to have shallow breathing that started to affect the shape of her chest. Her weakened muscles meant that when she cried, the sound came out much softer than it should. Megan and Bryant knew that most children diagnosed with the illness were lucky if they made it past their second birthday.

It was hard to accept that that would be Janes story, Megan said of her now 2-year-old daughter.

As they quickly found out, though, Janes story would be among the first ever to begin with an SMA diagnosis and continue with a brighter -- if still slightly unknown -- future.

The young family met with a doctor at the University of Minnesota who referred them to a neurologist. As it turned out, the Food and Drug Administration approved a treatment for SMA, known as Spinraza, just three months before Jane was born.

Jane went on to receive her first dose of Spinraza just 10 days after she was officially diagnosed with SMA. With that, she became one of the youngest patients in Minnesota to receive the treatment after the FDA approved it, Megan said.

The doctors didnt promise Megan and Bryant their daughter would recover the ground shed already lost in her short life. All they could say was that the treatment would stop the progression of the disease so that Jane wouldnt become even weaker.

We didnt know what to expect -- (we didnt know) how much this was going to help and where we were going to be, Bryant said, explaining how there wasnt a lot of existing research on the results of Spinraza since it was so new.

In spite of that, Jane began to improve. So far, Jane has received 10 doses of Spinraza. As far as they know, Jane may have to take the treatment for the rest of her life.

Nonetheless, each round of treatment has brought Jane a little more strength than she had before.

The first time she lifted her arm to reach for her toy was the most amazing day that weve ever had, Megan said. And then when she transferred a pacifier from one hand to the next, we thought we were seeing a miracle happen before us.

The treatment came not a moment too soon, either. The University of Minnesota Foundations publication Discovery ran a story on the family that claimed Jane would have needed a feeding tube and 24-hour breathing support for the rest of her life if she had started treatment even one month later than she did.

Today, Jane is able to sit up and move around in a small wheelchair the family received through the Cure SMA Foundation. She is able to eat some of her food on her own without the aid of a feeding tube. She wears a brace to help correct the onset of scoliosis, which was related to her SMA diagnosis.

During a recent physical therapy appointment, Jane looked like she was preparing to scale a mountain. She wore a harness around her waist with two ropes attached. Instead of a cliff top, though, the ropes were tied at the other end to suspended bags acting as counterweights.

Sanford physical therapist Tonya Onstad attaches a system of ropes and counterweights to Jane Comfort. Janes mother Megan helps by holding one of the weights. The system helps Jane learn to stand and is a regular part of her physical therapy routine. (Annalise Braught | Bemidji Pioneer)

She sat on a small stool with her physical therapist nearby. After a brief round of friendly negotiations with the therapist about whether she really had to do it, Jane used her still-growing vocabulary to say ready, set, go! As she hoisted herself up, the hanging bags took some of the weight off of her 25-pound body, helping her to stand on her own two feet.

Janes parents hold on to the hope that she will be able to walk one day. But, for the moment, Megan and Bryant still dont know what Janes physical abilities will be five, 10, or 20 years down the road.

Until then, though, they are trying to give Jane the best life possible. One of the ways they hope to do that is with an electric chair that will help Jane navigate the outdoors, which is where the family spends a lot of its time, raising and training dogs.

Currently, Megan and Bryant either have to carry Jane or take her out in a medical stroller since she cant navigate rugged areas in her current wheelchair. But, as Jane continues to grow, so does her desire to move about independently.

Instead of wheels, the chair they hope to get has Mattracks, so it can navigate the snow, mud, and uneven terrain.

Shes getting to the point where shes not content staying still; she wants to do things herself, Megan said. While were training and competing our dogs, she could be more involved with that.

The familys insurance wouldnt cover the specialized chair. So, the family is hosting a fundraiser that will be held Sunday, Sept. 15, at Lazy Jacks to help the family purchase the electric chair for Jane.

I think its just going to provide a lot more freedom for her, Bryant said about the new chair.

If You Go:

What: Fundraiser for Jane Comfort, dinner and silent auction

Where: Lazy Jacks, 6735 Fairgrounds Rd NW

When: Sunday, Sept. 15. From noon to 4 p.m.

Cost: $15, pre-sale or at the door at Lazy Jack's

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Jane's Journey: Genetic condition doesn't stop this 2-year-old, who is 'ready, set, go' - Grand Forks Herald