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!!!!

Nicholas F.

Nicholas F.


My son Nicholas was born at 31 weeks gestational due to IUGR. He spent 85 long days in the NICU over at Strong Memorial Hospital in Rochester, NY. When Nicholas was born luckily he did not require any oxygen or serious medical attention, it was a few weeks later in the NICU when the newborn scan had come back with some “odd results.” With a second repeat to the newborn scan it was diagnosed my son had Propionic Acidemia. Although nothing else indicated that he had PA the Genetics doctor insisted we treat him accordingly to the results. As he was maturing in the NICU he had to go under surgery because he developed
Necrotizing enterocolitis (NEC) the surgery and the PA worked against each other and caused my son to be in critical condition for 3 weeks post surgery. Once he finally healed up things began to look a lot better, he had such an appetite for his bottle, and “shocked” the genetics team with how much he wanted to eat. Post NICU  we had our son home and things felt normal. Nicholas got his colostomy bag off and that bettered his ammonia levels, which resulted in him no longer having to take Carbaglu (ammonia decreasing medicine.) At the 9 month check up, the Genetics team thought he was doing great with eating all his fruits and vegetables and decided to add on “pastas and grains.” Nicholas was given a goal of eating up to 6-7grams of protein a day.

He is now almost 11 months old and loves food! He has quite the appetite and will eat anything he may come across, which we keep a careful eye on. Developmentally doctors have no concerns as of now and is doing well. As his one year birthday approaches we have talked with his genetics dietician and will continue to increase his protein intake as his body allows. It’s been a roller coaster this first year but we are happy to be in a “safe” place now with Nicholas and his happy/silly personality!