When Michael Kreitinger’s son was first diagnosed at two and a half years of age, the doctor told Michael that his son Ezekiel (Zeke) has static ataxic cerebral palsy. Fast-forward several years to when Kreitinger’s third child, a daughter, Jocelyn, started showing similar symptoms. Kreitinger and his wife Becky sought a second opinion for the symptoms both of their children shared – delayed motor skills and walking, falling at or near the bottom of the growth curve, drooling, hand incoordination, etc. On October 9th of 2014, both children were confirmed to have Ataxia-Telangiectasia, or A-T.
A-T is a rare genetic degenerative disease that attacks children causing a progressive loss of muscle control, immune system problems and a high rate of cancer. A-T affects a large variety of systems in the body, causing symptoms that affect health and daily living. A-T is presently incurable and unrelenting with most A-T children being dependent on a wheelchair by the age of ten because they can’t control their muscles. Kreitinger recalls getting his world flipped upside down “You go from thinking worst case scenario that he might have a limp or a little bit of a funny gate to all of a sudden sounding like you are getting a death sentence for your children.”
Roughly one week after the confirmed diagnosis of A-T hit the Kreitinger home, Michael’s employer, Dakota Community Bank & Trust (DCB&T) stepped in to help. Knowing the financial burden that the Kreitingers would endure over the future years made Jason Hopfauf DCB&T branch president in Dickinson take action. A simple email to staff letting them know of the diagnosis spread into the entire community like wildfire. “You go through the different stages of grief with it. My wife and I, when it first happened, wished we had a private island to get away and shut out the whole exterior world. I think that’s where all the people and all the support we got saved us from that place,” says Kreitinger.
DCB&T held a No-Shave November that carried over into Zeke’s school. Many elementary school children and classmates of Zeke wore fake moustaches for the day in his honor raising $7,500 for the Kreitinger family. There was also a benefit that was held with a silent auction, meal, and carnival games that helped raise funds for the Kreitingers. “Dakota Community Bank & Trust is such a neat place where we care so much about each other. A lot of people were surprised that it was my boss that took charge and took action to go above and beyond to get things rolling.”
In 2015, the family visited Johns Hopkins University Hospital in Baltimore – the only hospital in the United States that specializes in A-T. This was helped made possible by one of Zeke’s teachers who donated her frequent flyer miles so that the family of six could make the trip flying. With the help of the benefit, the Kreitingers stayed out there a week to meet with various A-T doctors and were able to turn it into a family trip – as they didn’t know the next time they would ever be able to take another trip like it with their family.
Since that time, with help of the money raised matched with generosity from the prior homeowners, the Kreitingers were able to purchase a house and complete much needed renovations to it to make the home more handicap friendly and wheelchair accessible. The family was also able to purchase a new vehicle for the family that allowed for extra room for Zeke and Jocelyn as well as room to store their wheelchairs.
In May of this year, 2019, both Zeke and Jocelyn had feeding tubes placed. Not only can this help with future worries of aspiration as their swallowing becomes more difficult with age, but also to assist with their nutrients and weight gain. “As they get further along in the swallowing, we will worry more about getting food in their lungs which causes infections, they will depend more and more on that feeding tube. Right now we do an overnight trickle feed to help them grow. My son has put on 10 pounds since he has got his feeding tube, and my daughter has put on 5 pounds.”
Since the initial diagnosis in 2014 there have been medical advances in the research of A-T giving the Kreitingers additional hope. “It is not common for these A-T children to make it into their thirties. In the last several years though, they have managed to raise the life expectancy of these kids by 8 years.” He goes on to say, “We can’t guarantee how many years of life our children are going to have. But we can guarantee the life they have in those years.”
Medical expenses had not been too overwhelming for the first few years, but as A-T progresses, so have the medical needs resulting in those added expenses. “The doctors at John’s Hopkins would like to see the kids every three to four years just to track their progress. It helps their research make more sense when they can track these specific kids over time. Because it’s so rare and not all kids with A-T have the exact same mutation,” mentions Kreitinger. The family, now seven members, is hoping to make it back to Johns Hopkins in 2020.
Kreitinger says “As rough as things can seem sometimes, you see other people that have it worse. There are the blessings that come with it. I see the way Zeke has an effect on people – the kindness that he inspires in others, the generosity he inspires. I try to tell him and Jocelyn how much of a role they can have in helping others to God, helping others grow.” While the family has been through a lot, they have chosen to place their faith in God. They are moving forward knowing and trusting that God is going to put them in the right spot.
For more information on Ataxia-telangiectasia, please visit https://www.atcp.org/.
Written by Lindsey Hefta, Marketing Director