From Larry Jr, with a bit of help from Mom and Dad.
Hi everybody it is me Larry Jr,
How is everybody doing?
We are working hard on our 5K fundraiser. It is going to be on August 5. My goal is $100,000 and I hope to have 100 runners! Or more! I invited the Arc Livingston to partner with us. The Arc is a non-profit that supports individuals with disabilities. I love the ARC, they helped me a lot growing up! My friend Steve Sadler from the ARC and I are working together!
Our 5K is going to be at Pinckney Navigator/Pathfinder school football field/track. I went to Pinckney and so did my brothers and sisters. I love the Pinckney Pirates. I am very grateful they are letting us use their facilitates. They have been very supportive. My friend Mark Howell, from Fund-A-Life non-profit, has also helped us get organized for the 5K. He is very kind and helpful!
I really hope a lot of people register and can come run! Please register, sponsor or donate if you can. Thank you!
Here is the link:
Last week, the junior and senior girls at Pinckney High School had their annual Powder Puff Football Game. They raised over $1000 for my non-profit so we can help kids and their families at Mott Hospital! I am so grateful! I went to the game with some of my family to cheer them on. It was a lot of fun! Go Pirates!
Me and mom did a lot of Mott volunteering and talks to the new doctors and anesthesiologist and nurses. I think we did 8 talks since January. I tell my story as a patient, mom tells as the mom, and they ask us a ton of questions. I told them they need to work on a transition wing at the hospital for 18- to 26-year-olds. It is hard and scary to go from your doctors at Mott to the doctors at the adult big hospital who don't know you at all. But it has to happen. It is important that this be an easy and safe transition.
We started giving grants to patients/families in November and we have given 21 grants. Since June of last year, we all have raised close to $50,000, together! Thank you!
This week was very special because we helped a family who has a baby with an omphalocele just like me. I was so happy we could help them! Omphalocele is one of my main diagnoses.
I started my new job for Lorna at Uptown Coffee. It is fun and I love it! I am grateful for my job and for my Uptown Coffee friends! I also saved my money and bought a lawnmower. Me and Jim like to mow the lawn!
I am excited for summer! I'm going to the Godzilla Convention in July in Chicago! I hope to go camping and to the Howell ballonfest. I had to be in the hospital a couple times this spring because I kept getting really sick with gram-negative rods. I'm doing antibiotics every day to keep the gram-negative rods gone from my kidneys and I’m doing physical therapy again because my back is very painful and my “Z” curve is really bad. I start aqua therapy at Mott with my physical therapist in June. It helps me when I am in water, because it takes the pain away. On my birthday I really want to go to a casino!
I hope everyone is staying safe and healthy! I hope you can come run at my 5K please! I would love to say hi to everyone! Who wants to push me in my wheelchair?
Love your friend Larry