Help Maddy Get To Mayo!
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Maddy turned 14 in May. She just finished 8th grade, and is excited about starting high school at Marcus in the fall!
I'm her mom, Sam. We live in Flower Mound, Texas with her stepdad, her sister, and her little step-brother. Originally, we are from Chicagoland, and Portillo's is still her absolute favorite food! Maddy, and her dog, Buddy, love to snuggle on the couch (or in the hammock) and watch internet videos or just chill.
For years, Maddy has suffered from a variety of ailments. She had to stop swim lessons because she couldn't regulate her body temperature and it would drop to unsafe levels. She would visually change colors. It was very scary to see! She had to stop gymnastics for the same reason. She would get overheated. Maddy was a technicolor kid! Blue in the cold, reddish purple in the heat. She saw a cardiologist, but they couldn't find a cause. It was upsetting when she had to quit... Gymnastics had been really easy for her, and she was doing great because she was extremely flexible!
Now we know that she is TOO flexibile, and has Hypermobility Joint Syndrome. Her knees, fingers, and even hips have recently fallen out of joint. The muscles and tendons around her joints aren't strong enough to keep them in place. The technicolor kid has also been diagnosed with something called vasomotor instability, postural orthostatic tachycardia syndrome (POTS), amplified musculoskeletal pain (AMP), abdominal migraines, IBS, and anxiety!
In the past year, everything has gotten worse for Maddy. She missed over 25 days of school! She is horribly fatigued, in pain nearly every day, falling sometimes because her BP drops, and overall in very rough shape.
She has been seen by every doctor you can imagine... gastroenterologist, pain specialists, neurologist, cardiologist, pediatrician what feels like every week... She has nearly ten daily medications for her laundry list of diagnoses. We were at our wits end when we got the referral to the Mayo Clinic in Rochester, MN.
Maddy and I had the phone evaluation with Mayo, and she was accepted into their pediatric pain rehabilitation program! It's 3 1/2 weeks long, and she will work intensively with therapists and other kids who understand what she has gone through, is going through. It's the first real hope we have found to help her feel better! The mission of the program isn't to necessarily cure the pain, because that isn't always possible. They will teach her how to keep going and COPE with the pain.
This is the program website... It's intense, and is just what she needs! Mayo Clinic PPRC
So, she and I (and Buddy) need to go to Minnesota for 3 1/2 weeks! Her medical insurance, it sounds like, will cover most of the program, BUT we need to stay in a hotel, and it's an outpatient program. For some reason, kids in this program aren't eligible for stays in the Ronald McDonald House or other charity stays... We are asking all of you to help us with those pieces.
I know the Mayo Clinic will help my daughter.
We would so much appreciate your help in funding our travel, hotel stay and food for the time we will be in Minnesota! Without help, we can't afford it, and it could really make a difference in Maddy's life.
I'm her mom, Sam. We live in Flower Mound, Texas with her stepdad, her sister, and her little step-brother. Originally, we are from Chicagoland, and Portillo's is still her absolute favorite food! Maddy, and her dog, Buddy, love to snuggle on the couch (or in the hammock) and watch internet videos or just chill.
For years, Maddy has suffered from a variety of ailments. She had to stop swim lessons because she couldn't regulate her body temperature and it would drop to unsafe levels. She would visually change colors. It was very scary to see! She had to stop gymnastics for the same reason. She would get overheated. Maddy was a technicolor kid! Blue in the cold, reddish purple in the heat. She saw a cardiologist, but they couldn't find a cause. It was upsetting when she had to quit... Gymnastics had been really easy for her, and she was doing great because she was extremely flexible!
Now we know that she is TOO flexibile, and has Hypermobility Joint Syndrome. Her knees, fingers, and even hips have recently fallen out of joint. The muscles and tendons around her joints aren't strong enough to keep them in place. The technicolor kid has also been diagnosed with something called vasomotor instability, postural orthostatic tachycardia syndrome (POTS), amplified musculoskeletal pain (AMP), abdominal migraines, IBS, and anxiety!
In the past year, everything has gotten worse for Maddy. She missed over 25 days of school! She is horribly fatigued, in pain nearly every day, falling sometimes because her BP drops, and overall in very rough shape.
She has been seen by every doctor you can imagine... gastroenterologist, pain specialists, neurologist, cardiologist, pediatrician what feels like every week... She has nearly ten daily medications for her laundry list of diagnoses. We were at our wits end when we got the referral to the Mayo Clinic in Rochester, MN.
Maddy and I had the phone evaluation with Mayo, and she was accepted into their pediatric pain rehabilitation program! It's 3 1/2 weeks long, and she will work intensively with therapists and other kids who understand what she has gone through, is going through. It's the first real hope we have found to help her feel better! The mission of the program isn't to necessarily cure the pain, because that isn't always possible. They will teach her how to keep going and COPE with the pain.
This is the program website... It's intense, and is just what she needs! Mayo Clinic PPRC
So, she and I (and Buddy) need to go to Minnesota for 3 1/2 weeks! Her medical insurance, it sounds like, will cover most of the program, BUT we need to stay in a hotel, and it's an outpatient program. For some reason, kids in this program aren't eligible for stays in the Ronald McDonald House or other charity stays... We are asking all of you to help us with those pieces.
I know the Mayo Clinic will help my daughter.
We would so much appreciate your help in funding our travel, hotel stay and food for the time we will be in Minnesota! Without help, we can't afford it, and it could really make a difference in Maddy's life.
Organizer
Samantha Piper
Organizer
Flower Mound, TX