Pickleball Success!
Thank you to everyone who supported our inaugural Pickleball event! Stay tuned for more events to come! Mark your calendars for our annual Golf Tournament at Crescent Farms on September 27, 2025
Update on Lance Our
2023 Recipient
Life in the last year has been, well not really sure what the right word is...crazy, lots of ups and down, trying, finding that your patience gets tested absolutely daily on levels we didn't think existed and so many more. Our life has been flipped on its head with the amount of specialized equipment we now have, and what it costs is beyond what I thought possible. We still have appointments every few months, as well as different organizations that follow us. We have been beyond blessed with people who have helped us so far with different equipment or items that make life a little easier or donations. We have ramps and got our driveway redone, as well as getting sidewalks done so Lance is able to get around easier with either his wheelchair, walker, or trike. We were very blessed with another organization that helped to get a special bike for him. They work directly with his PT to make sure that what Lance needed for support to ride was able to happen. He loves to ride the trike. Lance is going to be participating in an adaptive triathlon next weekend. He said he didn't want to do the swim part, and I am ok with that,but will do the biking and walking part. It will be at the facility where he does outpatient therapy. He does OT, PT,and Sspeechevery week. Lance is still using a wheelchair most days when we go places in public. He is going to school full time right now and has been good for him! The public school that he attends is the same one he did prior to last summer. They have been amazing, making sure that he still feels included and that he can play with his classmates. They now have 2 handicap picnic tables in both areas that Lance has recess so he can sit with friends and play puzzles or games. They have also gotten a swing that he is able to use as well! His desk he now has is fully adjustable ,o he can move it up and down as needed with the push of a button. He does use a gait trainor/walker several times a day while at school. We were able to find a second one that we are able to leave at school and still have another one at home. He has 2 paraprofessionals that help him ththroughouthe day.
The school nurse is one of his favorite people! I think he has a crush on her, lol! Lance has made some progress with eating and drinking. After having an NG tube for almost 11 months, we tried going without one after he got sick t ae end of June, and have been able to keep it out since. There will always be the chance it will go back in if he isn't getting enough to eat and drink oral. Let's keep praying he is able to keep it out! We still work with Dr Brady at Ranken Jordan for GI. We still have our doctor at Children's who follows Lance. As far as his prognosis, we still take things day by day. Some days are better than others with better muscle control. We have yet to find another case like Lance's. The Genetics doctor at Children's
Every case they know of have all presented differently. From what they could tell, Lance, for now, doesn't show signs of the RDS portions of his diagnosis. If that does present, we will know very quickly as he will show signs of Parkinson and the signs would show more than likely within weeks and get worse. They didn't have a whole lot to tell us other than the signs to watch for and that it may eventually affect his heart. We know that every day have with him is a blessing. It is hard to think very far into future because his future is very uncertain. We do know that as far as traditional medicine goes, for now, we just maintain where we are at.was able to find a similar case,but not really.
We are looking at a different type of treatment that may help him regain some muscle control and possibly his speech. As of now, Lance makes some sounds, but most communication is with his talker. I like to think I can read his mind on some things, and others we look at each other and try to figure out what he would love to tell me. It's like a game of charades sometimes. It's funny when I guess correctly! His eyes light up and a big smile spreads across his face! Someone once told me they can't believe how in tune with him I am...I can't see it any other way. When your voice is taken away, you do what you can. We are very thankful for the donation we received from Brendan's Buddies! It has helped pay for various things/equipment like a new car seat that we needed that insurance didn't cover and the second walker that he uses at school, and some medical supplies that insurance also didn't cover. I wish I could say that Lance will make it back to his baseline for what he could do before, but we know that at this point, he won't. We are grateful he is here with us, and we get to see his personality shine through and hear his laughter. We put our faith in God, and He will be there to help us through whatever we will endure on this journey.
Proud Supporters Of
St. Louis Arc
The St. Louis Arc provides a lifetime of high-quality services, family support, and advocacy to people with intellectual and developmental disabilities.
Intellectual and Developmental Disabilities Research Center
IDDs collectively affect one in 6 individuals in the U.S. population and exact a very serious, often catastrophic toll on quality of life. Since it’s inception in 2010, the IDDRC@WUSTL has capitalized on institutional strengths at Washington University, the resources and collaborations within the broader St. Louis, and a network of scientists at 13 other NICHD-funded IDDRCs to promote understanding of pathogenesis through key advances in infant behavioral phenotyping, clinical genomics, developmental neuroimaging, and the use of rodent and cellular model systems. These have resulted from a coordinated agenda to trace genetic and environmental disruptions of neural connectivity to their origins at the respective levels of cell, synapse, circuit, and behavior, with the ultimate goal of informing new treatments and interventions for IDD.
Ronald McDonald House Charities
Ronald McDonald House Charities: a nonprofit family & children's charity dedicated to supporting families with sick children in their time of need.
Brendan's Buddies Friends
from past events
Images are a powerful way to showcase what we do. As you browse our site, please take a moment to view our gallery and experience the fun we have while supporting a great cause.
