As a parent there is nothing worse than realizing something is wrong with one of our babies and we can’t fix it. What’s even worse is finding out something life-threatening is going on and all you can do is hope and pray that your insurance will cover the best treatment, the doctors will provide it and your baby’s body will accept it. There are no guarantees, just a lot of waiting, hoping and praying.
Glen and Gabby Preuss are the proud parents of five, Jacob, 9, Brogan, 5, twins, Jackson and Bellamy, 3 and baby Jason, three-months-old. The family recently bought a house and have been adjusting to new baby and a new home. It was when Jason was about a month old his parents started noticing that something just wasn’t right.
“At about a month old when he wasn’t reaching development milestones we started to become concerned,” said Gabby. “By the time he turned two-months-old he still had no head control and wasn’t moving his limbs like a ‘normal’ baby would. We became more concerned and started pushing for answers.”
After trips to a specialist in Great Falls the parents started getting some answers, but not any that any parent wants to hear. Spinal Muscular Atrophy (SMA), type 1, was the diagnosis. SMA is a rare genetic disease that affects the central nervous system, peripheral nervous system and skeletal muscles. There are four different types of the disease, with type 1 being the most severe. The disease causes muscles to break down, restricting the ability to move arms and legs and can cause respiratory issues. If left untreated this disease is fatal to babies.
“Currently we are being treated at Kalispell Children’s Hospital, but this journey will take us to many specialists,” said Gabby. “We will most likely be referred to Seattle for ongoing monitoring.”
There is treatment options for the disease, none of which are cheap by any means. Baby Jason’s best chance would be a gene therapy called Zolgensma. Gabby explained that it’s a very expensive, one-time gene therapy that replaces the missing gene so the muscle neurons can start to function properly again.
“It costs about $2.1 million,” said Gabby. “While we await insurance approval we will be looking into another gene therapy called Spinraza, which require numerous, ongoing injections and doctors appointments for Jason’s entire life.These drugs are new, so the outlook looks promising, but there is not a whole lot of information to make a definitive answer.”
Gabby and Jason are currently in Kalispell and Jason received his first injection of Spinraza on Thursday, Nov. 12. Soon after, Gabby got some fantastic news, their insurance has approved Zolgensma!
“Our baby can get his designer genes!”
When and where has not been determined but having the approval is a huge relief, something the family is in desperate need of. While Gabby and Jason have been doctoring in Great Falls and then sent to Kalispell, Glen has been at home with the other four children, trying to juggle work at Albertsons, taking care of four busy little ones all while worrying and trying to stay updated on his youngest child’s situation.
“We’re trying to hang on to all hope, though it’s definitely tough,” said Gabby. “Glen doesn’t have me there to support him and he’s not here with me to support me. Information gets skewed as it’s relayed from doctor to nurse to me to him. Glen has been struggling to find volunteers to care for our kids while he’s at work. The two older kids know kind of what’s going on so they’re stressed and it’s just really hard all around.”
Friends have been trying to lighten the load, setting up a meal train to help relieve some stress from Glen, volunteering to help get kids to and from school, but a lot of the time Glen is trying to do it all, on his own.
Finances are also getting tight. Insurance is covering the medical procedures, but the travel, food, and other costs of being away from home add up quickly and the regular day-to-day expenses and bills at home don’t just go away when tragedy strikes.
A GoFundMe account has been established at:
https://gf.me/u/y7x9xq, and the link can also be found on Gabby’s, and numerous others, Facebook pages.
If someone would like to help out financially and would rather bypass the GoFundMe account, which takes a fee from every donation, they can stop by or mail a check to Bear Paw Credit Union where Glen and Gabby have an account.
Financial help is most certainly needed, but help with hot meals and maintaining day-to-day activities with the kids is also very much needed. Glen and Gabby both appreciate any help that people can offer, even something as simple as dropping off a bucket of chicken for dinner.
If you would like to give Glen a hand with things here on the home front you can reach out to him at (406) 450-1802, or get in touch with Gabby at (406) 450-1707.
Gabby said texting is probably the easiest way to get in touch as Glen does work and at any given time she is busy with doctors and specialists in the hospital room.
“We really want to thank everyone from the bottom of our hearts for their support while we navigate this new journey,” said Gabby.
They say it takes a village to raise a child and in this case Glen and Gabby need some love and support from their “village.” Whether it’s a hot meal, a monetary donation or simply saying a prayer and sending good thoughts, all is appreciated and needed.
This medical journey into the unknown has only just begun for the Preuss family, but as a community we can let them know they are not traveling alone.