Author Archives: Angela Waits
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Rachel G.
Family Stories – Rachel G.
My name is Rachel. I am 40 years old and have propionic acidemia. I live with my mom and dad. Three days of the week I work at a work center for the disabled and on 2 days I go to work at the Painted Turtle. I love both my jobs but the Painted Turtle is my favorite. I get to paint and do other artwork that is sold to the public.
I love to read and go on my computer. I attend events at my local Special Recreation Program. We go bowling, have dances and attend plays.
My favorite vacations are at Disney World and the Disney Cruises. Disney is very good about helping me with my special diet.
Sam W
Sam W.
Sam was born a week and 4 days late. Everything about his birth was perfectly normal unlike his older brother. I had the birth I wanted; he was breastfeeding well. For 3 days, life was perfect. Then, we got the phone call. His newborn screen had elevated C3. He had to go to the ER immediately. He did not have any symptoms at this point, so we assumed it was probably just a precaution. The tests at the ER showed elevated ammonia, hypoglycemia, and elevated ketones. He was then admitted to the Children’s hospital. After 5 days, we had the diagnosis of PA. He was discharged and stayed out of the hospital until 7 months old. From 7 months to 18 months, he was hospitalized 9 times for illnesses, exhaustion, and constipation. Most visits were only for a couple of days. After 2 rough hospitalizations, Sam was terrified of any female other than me (we assume because most nurses and phlebotomists were female). That’s when we decided to have a gtube placed. It was the best decision we ever made. He is now 3 and has not been hospitalized since the gtube surgery. Thanks to the newborn screen, he has never had a crisis. He is where he should be cognitively. Physically, he has hypotonia. He had to have therapy to help him learn to crawl and walk, but he still managed to walk by 18 months. In addition to the hypotonia, his energy levels are noticeably less than kids his age. During his yearly heart exam, he was found to have some signs pointing to future development of cardiomyopathy. It is too early to do anything about it so for now, we are just monitoring that.
Overall, Sam is a happy and thriving 3 year old. He is all boy and loves guns and superheroes. At the same time, he can be very sweet and loving. He also loves to eat especially chips and anything fried! We are so thankful for him and for all the doctors and friends who have helped us through our journey so far. Sam is only doing well because of our PA community and his wonderful metabolic doctor. No matter what the future holds for him we will continue to trust God and rely on him to get us through the tough times.
That’s Sam’s story. Thanks for all you guys do to help with PA.
Christian M.
Christian M. – updated Febrary 2019
Christian, also known as CJ, is a fun loving five year old. He loves to listen to music, dance, and sing. His favorite activities include playing with his sister and watching YouTube videos. Christian is in full day kindergarten and loves socializing with his friends. Christian joined Yoga Club at school and he participates in gymnastics, tennis, magic classes, and horseback riding through the park district. He loves to travel and his favorite place to visit is the Great Smoky Mountains.
Christian’s older sister was diagnosed with Propionic Acidemia through the newborn prescreening, therefore we had a crisis management plan put in place for his birth. Within 48 hours of his birth, we received his diagnosis of PA. Currently, Christian eats 11 grams of protein, drinks Propimex-2, and take vitamins daily. We always seem to end up in the hospital during flu season, but other than that Christian has been a very happy and healthy little boy meeting all of his milestones.
Past story – Christian – age 3
Christian, also known as CJ, is a three year old dancing machine. He loves to listen to music and have dance parties in our kitchen and basement. He is the life of the party and always making people smile. CJ attend preschool twice a week and is also involved in soccer and gymnastics. At home, he loves to follow his older sister around and try to play whatever she is playing. His superhero toys are often battling Barbies. Like most other three year olds, CJ loves cars, trucks, and his favorite television show is Paw Patrol.
Maya M.
Maya M. – updated February 2019
Maya is a nine-year old sweetheart. She loves watching YouTube videos and making her own videos for her MayaTV channel. Maya loves to make slime and listen to music on her iPod. She also likes traveling and going on vacation with her family. Maya is in third grade and loves reading, writing in cursive, and solving multiplication problems. She joined her Service Learning Club at school and participates in gymnastics, magic classes, tennis, drama, and horseback riding through the park district.
Maya was diagnosed with Propionic Acidemia after coming home from the hospital. We were fortunate to have a quick diagnosis through the newborn prescreening and avoided any metabolic crisis. Maya consumes 13 grams of protein by mouth daily. She drinks Propimex-2 and takes vitamins. Overall, Maya is a happy and healthy little girl who makes everyone smile with her humorous personality.
Maya – 7 years old
Maya is a seven year old, energetic, and hilarious little girl. She is currently in first grade where her favorite subjects are computer class and gym class. Maya loves to travel. Her favorite travel locations are anything involving a beach and sunshine. She spends basically her whole summer at her grandparents’ Yogi Bear campground. She loves “driving the golf cart”, swimming, fishing, and trying to catch frogs. Maya loves to try all activities. She has been involved in ballet, hip hop and tap classes. She has been in Lego club, Mad Scientist club, Cooking club, and Art club. She has also tried gymnastics and theater. Maya’s favorite hobbies include making videos of herself and playing with all of her baby dolls.
Maya was diagnosed with Propionic Acidemia through her newborn prescreening. With early detection, we were able to avoid any major crisis. Currently Maya consumes 13 grams of protein by mouth and drinks Propimex-2 daily. She is not a big fan of all her doctor’s appointments, but understands she needs them to stay healthy.
Scarlett Camille
Scarlett Camille 4/5/2006-11/21/09
The most wonderful thing in the world happened on April 5th, 2006 … you were born….Scarlett Camille.
Since then life was changed forever in a very special way!
There’s so many things you brought to my life, endless wonders, incredible sweetness, such a tiny little miracle child, unforgettable moments, joy that grew and grew, more love than you could ever dream possible!
I will never forget your strength and courage, and I will be forever proud to have had such a darling daughter.
Although your time here was short, you filled my heart with a lifetime of memories.
What a treasure, a touch of heaven here on earth.
Mommy’s little angel…
Awaiting the touch of a little hand and a smile from a little face.
Love you Bunny Bunny Bunny*
Reprinted from Autumn 2010 Newsletter

Gwen
Gwen M. – updated May 2015 |
My beautiful girl just turned 9 years old this year and it seems nothing short of a miracle. At 2 days of age, Gwen became catastrophically ill, her body temperature dropped below 90 degrees, ammonia level exceeded 1,500 umol/L and she stopped breathing. She was placed on a ventilator and received peritoneal dialysis for a couple of days until she came out of her coma and was breathing on her own. On her 3rd day she was diagnosed Propionic Acidemia and her future was very uncertain. During Gwen’s first 3 years of life she spent as much time in the hospital as she did at home. Although she’s been admitted more than 50 times, she’s undoubtedly one of the happiest people on Earth. At age 1 she stopped eating by mouth, and since then she’s been fed 100% by a feeding tube because she refuses to eat anything. For many years she wore a backpack to carry her feeding pump, but she is now able to tolerate her formula through small bolus feedings and has a nurse who cares for her during the day.Gwen knows she’s very cute and she plays that to her advantage. What she does not yet know is that she’s very brave, has an endless capacity to forgive, an amazing will to live, and a beautiful spirit from God that has touched the lives of hundreds. She talks non-stop, sings the entire time we’re in the car, jumps off of anything she can climb on, loves to dance, play with her American Girl dolls and spend time with her brother and friends. She’s in second grade and receives special education services for PT, OT, math and reading. She’s also in Brownies and on the Special Olympics swim team! She is a miracle, a daily blessing, and a ray of sunshine in any room. I am grateful for every day I have with her and so proud to be her mom.
—————————————————————————- Gwendolyn Grace M. was born at 3:33 p.m. on February 3, 2006. She will soon be only 5 months old, but has already brought a lot of drama to our lives! She was diagnosed at 3 days of age with Propionic Acidemia. At 2 days of life we found ourselves at Columbus Children’s Hospital emergency room only hours after being discharged from the hospital of her birth. We were quickly transferred to the NICU, where we spent the next 2 weeks. That first night at Children’s, her ammonia level reached over 1,500 & she had stopped breathing. The fantastic medical staff acted very quickly. Gwen was intubated & put on dialysis. We nearly lost her a couple of times during that stay, but she pulled through. She ended up having another episode less than 2 weeks after being discharged. Once again, she pulled through magnificently. We have quickly learned the fragile nature of good health, the strength of a family, along with the amazing power of prayer. My baby girl is nearly 4 months old & seems to be beating all the odds. Despite her rough beginning, she is meeting all her early milestones. Gwen has an awesome fun club, including her brother, parents, grandparents, aunts, uncles, cousins, doctors, nurses, teachers, & friends. We are so grateful for their love & support. Check out our new web-site with even more pictures – Click Here. Gwen’s 1st B-day!!!! |