MA

Our Kids

Avery

Our Kids  / Avery Malonic Acidemia About two weeks after we brought our new daughter Avery home from the hospital we received a call from our pediatrician’s office telling us that the state department of health had contacted them and

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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,

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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

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Tyler
Our Kids

Tyler – MA

Tyler was born on 7th July 2012 weighing a healthy 3.35 kilos. Tyler’s mum, Chantelle, affectionately known as Channy, had a normal pregnancy with the only complication being in the late stages of labour when she was 9.5cm’s dilated her

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Our Kids

Casey

Casey was born on a hot July day in 2008. His mom’s third child, he was delivered a week early via C-section, weighing 8.5 pounds.

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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
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