On June 25th Jadon will be TWO YEARS old! I still remember the day Kristin and Tony brought Jadon to the offices after their doctor’s appointment when they received the diagnosis that he had Spinal Muscular Atrophy.
At that time Jadon was only a few months old and from that day Tony and Kristin’s worlds were rocked. They have been juggling this new normal for two years. Tony decided sometime early within the first year that he would leave his job to stay at home with Jadon. Since then Tony has built many things that have helped accommodate Jadon’s special condition. Eventually, because of Jadon’s condition he required more than medical equipment but also medical care personnel to assist with his needs. So they have medical care personnel who attend him, gratefully in their own home.
Tony and Kristin sadly realized during Jadon’s first winter that his trips to church would be severely limited and finally had to cease altogether. The risk for infection on his continually weakening body was far too great! Tony has been able to attend some without them. Their outings with Jadon are very limited. Recently, they were able to take Jadon to the zoo.
As I can only imagine, between work and caring for Jadon, they have been fairly isolated. Focusing on his care, work and special events to raise awareness of this deadly disease (which kills more babies than any other genetic disease) have occupied all of their waking moments and limited their sleeping ones sometimes.
Kristin and Tony’s mothers have taken turns spending nearly a year each to live with them to help out. And they have found great camaraderie with other SMA families in the area. However, Kristin and Tony do need more help. They need community…their spiritual community…their church family. So they are inviting us in to help.
I asked what are some ways that we could help out. So here they are:
- Sign up at www.takethemameal.com. Kristin said, “It’s really NOT about the food.”
- Guys, drop by to visit with Tony and Jadon during the day. Their address is 1303 W Elm Terrace, Olathe 66061.
- Email them anytime. Convenient for them to answer.
- Become a friend on FACEBOOK and keep up with Tony’s updates.
- Tony is painting his house alone. He hasn’t asked for help but you could ask him.
- They are establishing Jadon’s Hope, a not for profit to raise awareness for SMA. If you know anything about not for profits and could help with paperwork.
- Send a card or note of encouragement to their address: Tony & Kristin Burks & Jadon, 1303 W Elm Terrace, Olathe 66061.
Let's surround them with the love of Christ through His Body!
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