Our Kids

Our Kids

Nolan and Ethan

Our Kids  / ​Nolan and Ethan Glutaric Acidemia, Type 1 The Story of Nolan and Ethan, written by their mothers, Stephanie and Mandy Nolan- On Monday, November 7, 2011 my 10lbs. 3ozs. boy finally arrived in Menomonee Falls, Wisconsin.  Nolan David.

Read More »
Our Kids

Lana

Our Kids  / Lana Malonic Acidemia Lana was born on the 18th June 2014, exactly on her due date and weighing a healthy 3.4 kg. I had a good pregnancy and a great birth experience. Seemingly healthy and doing well,

Read More »
Our Kids

Kamryn

Our Kids  / Kamryn Malonic Acidemia On August 15, 2011, I was getting ready for my scheduled C-Section for my third child.  Kamryn Marie Able was born with no complications.  She was a rather large baby, weighing in at 9lbs

Read More »
Our Kids

Maya and Christian

Our Kids  / Maya & Christian Propionic Acidemia People always say that you never know true love until you become a mother.  I think those people are absolutely correct.  I will never forget the moment when my daughter was placed

Read More »
Our Kids

Micah

Our Kids  / Micah Isovaleric Acidemia We had our first baby- a boy- on a Friday evening in spring of 2010. We were thrilled with how perfect he was, admiring every finger and toe, and gladly took him home after

Read More »
Our Kids

Sarahya and Xayvior

Our Kids  / Sarahya and Xayvior MMA Mut 0 Most people think of the fighting sport when I say MMA, but my two children are true MMA champions, and here is their story. I’m always amazed; always amazed at the

Read More »
Our Kids

Maren

Our Kids  / Maren Propionic Acidemia Maren Winter was born on February 13, 2012.  She weighed 8 pounds 6.5 ounces and was 21 inches long.  She had a bit of peach fuzz for hair and was chubby as chubby gets! 

Read More »
headshot of Kristy Hare, woman with brown hair and glasses
Our Kids

Kristy

Our Kids  / Kristy, Propionic Acidemia, Age 60 Happy 2025!I turned 60 years young last December and while known for being the oldest with Propionic Acidemia,; around 6 years ago I went to NIH and was informed that metabolically, I

Read More »
Our Kids

​Emma and Jimmy

Our Kids  / Emma & Jimmy An MMA Journey from China to US  MMA, Mut 0 Our First Child Died Caroline and I are very happy to wait for our daughter, Emma, to come. Every night, I told stories to

Read More »
Our Kids

Dylan PA

Our Kids  / Dylan Propionic Acidemia (Liver Transplant) Dylan Matthew was born on October 12th, 2013 in Waconia, Minnesota, weighing in at 8 pounds, 2 ounces.  After Dylan was born, the doctors noticed that he had a lower than average

Read More »

Subscribe to Newsletter

Recent Post

flyer for webinar on GA1 natural history study on February 18, 2026.
GA-1 Natural History Webinar
Rare Disease Day 2026 – OAA Tshirt Fundraiser
Organic Acidemia Natural History Registry has migrated to a new platform!
NIH awards more than $15 million to fund two rare diseases consortia
picture of young noy smiling and holding handmade Rare bear
Abram & Asa, MMA Cbl B
two young girls sitting on a merry-go-round
Elizabeth (age 9) and Morgane (age 7), Propionic Acidemia
blonde haired baby with yellow onsie crawling on a blanket
Ryan, 5 months old, Propionic Acidemia
first page of the august 2025 OAA newsletter
Summer 2025 OAA Newsletter (Digital Version Available Now!)
photo of orange race car with the number 760 on the side driving on race track
Elijah (19), Tyler (22), MMA Mut 0, Liver/kidney transplant
toddler sitting on a knitted blanket next to some pink sunglasses
Emerald, Glutaric Acidemia, Type 1, Age 2
front page of the OAA Spring 2025 newsletter
Spring 2025 OAA Newsletter (Digital Version Available Now!)
flyer for OAA webinar about introduction to ABLE accounts
Intro to ABLE Accounts for OAA Families
Flyer for 2025 OAA rare disease day t-shirt
Rare Disease Day 2025 – OAA Tshirt Fundraiser
2025 OAA Fundraising Calendar Ready to Purchase!
first page of the OAA Patient Assistance program flyer
NORD’s new Organic Acidemia Patient Assistance Program
Nutricia Changes Production of GlutarAde
Jonathan, MMA Mut 0, Age 14
Eli, Glutaric Acidemia, Type 1, Age 3
Mead Johnson Formula Update – October 2024
Mead Johnson Formula Interruption – July 29, 2024
Jackson, Methlymalonic Acidemia, Cobalamin C, Age 9
Eithan, Propionic Acidemia, Age 2 – Ecuador
Luisa, Methylmalonic Acidemia Mut 0, Age 4 – Brazil
Thank you Sponsors!!
Upcoming Zoom Webinar – Meet our newest physician at the NIH!
Hope you can attend the 2024 FOD/OAA Family Forum
Ask Me Anything with flok!
Rare Disease Day 2024 – OAA Tshirt Fundraiser
3D avatar of woman with multicolored jumpsuit and chunky black boots
Update: My Newest Adventure – Michael Clapcich
Karli, Propionic Acidemia, Age 34
Raechel, MMA, Cobalamin C, age 20
Formula Shortage Survey
Holiday Fundraiser – Texas Roadhouse Gift Cards!
2024 OAA Fundraising Calendar Ready to Purchase!
Demo Derby Sibling Honors Brother and others with Organic Acidemias!
Meadow, 3-MCC
Leo – Isovaleric Acidemia, Age 20 months
Summer 2023 OAA Newsletter (Digital Version Available Now!)
Webinar Discussion on Liver/Kidney Transplant with other OAA Families
Join Us for a Dietician Talk-Exclusively for OAA Families
Update on the Rapid Blood Ammonia Testing Instrument
Katie – Glutaric Acidemia, Type 1
Cameron, Methylmalonic Acidemia, Cbl C, Age 6 years
Nolan, Propionic Acidemia, Age 18 months
Winter 2023 OAA Newsletter (Digital Version Available Now!)
Luca, Davide and Simone
Jose
Gabriel
Select Language