I am so glad that she is okay, GA1 is a serious and rare disorder, especially if not detected early. There is another form, GA2, that is even more rare. As I am typing this I am sitting next to the hospital bed of my 26 year old fiancee who is living with GA2. To this day, he sees a pediatric specialist because there few (if any?) adults living with GA2. We searched for years for this specialist and did not find one until March of 2008 (we could not find a Dr. willing to help us find a specialist so we were on our own). Please visit: http://www.glutaricacidemia.org/ This is a wonderful non-profit research and support group. Without their help we would have never found the specialist who is helping diagnose my fiancee with DNA testing and creating a protocol for future hospital visits. This Dr. (Dr. Ahmad at the University of Michigan) was the first Dr. to ever tell us about GA2, instead of us telling them about it. There is so much to be learned and as scary as this ordeal must have been for the Baios and I am so glad they have brought some public awareness to Organic Acidemias. Thank you for sharing your story and may it help others detect these disorders early, but also understand that they are not alone. It is easy to forget, especially when we are constantly “fighting” with hospital Dr.’s who have never heard of this condition and want to try their own way of treating it, instead of listening to us and doing what has worked in the past. The lack of awareness among the medical profession can be more frustrating than living with the disorder itself.

Shane. I would like it if your wife would email me. I wrote the comment before you did. I am interested in talking to or emailing your family to talk about your experiences with this disorder. My son Nic had the DNA test last week and now we have to wait 4-6 weeks for the results. Please email me at rhondawd@aol.com

Respectfully,
Rhonda

I would like to say i am thankful that Bailey does not have this terrible disorder. My son who is now 13 was diagnosed with GA1 at 6 months. He has been fighting for his life this whole time. Because of lack of testing at his birth he has suffered severe brain damage and numerous life threatening hospital stays. If anyone knows how to contact Scott about his foundation please let me know. Myself and my wife would love to help in any way possible. To help other families with our knowledge and contacts.

Thank You

Wow! I heard about the Baio’s story right after I just went through the same experience with our newborn son Nicholson. He was born on May 19th in New York state. He was 9 days old when I received the phone call from my pediatricians office informing me that he tested positive on the newborn screening for GA-1. This was devastating
news. We waited for one dreadful week to find out the results from the metabolic specialist. We were so blessed to find out that it was more than likely a false positve result. The metabolic specialist up in Syracuse, NY will also be doing a DNA test on Nicholson soon. This experience has been traumatic for my entire family. God bless any one who has this disorder and any family who has to go through such an experience as we have. We truly understand what the Baio’s went through and I have a ton more empathy for the families of the children I work with.
We are grateful that New York state screens for 45 different disorders however false positive results create extreme anxiety in the newborns parents and this needs to be looked at more closely. Support is needed for families that experience this.
We commend the Baio’s for their dedication.
Respectfully,
Rhonda Winner-Dodzweit,(mother of 2 young boys, and therapist for infants and toddlers with disabilities for the past 15 years)

I have a metabolic disorder, Phenylketonuria, similar to GA-1 where my body can not break down any protein at all. I know what they went through from the stories my mother has told me… they called her when I was 7 days old and told her to stop feeding me! They are strong family and I can promise you, a lucky family… because it is very hard growing up knowing you could have been mentally disabled. I wish them the best of luck, and am so grateful of their outreach. Metabolic disorders have not been brought to the public eye before and maybe this is what we need to get the ball rolling on research. I’ve taken part in many studies, but never have any been very successful. I am 22 years old now, with a Bachelor’s degree and hope that someday I can make a contribution to other children and adults who struggling with these disorders. It’s just not fair…

Please research metabolic disorders… Phenylketonuria, GA-1, Maple Syrup Urine Disease, and so many more. We are few and far between… but we are out there… and any support could help to finding a treatment… or even a cure!

I’m so glad that the Baio’s little daughter is doing well. She is a beautiful darling. I’m also so happy that Scott has a newfound appreciation for life and for looking to God with gratitude and humility. Unfortuately, most of us have to go through something like this to be able to say “I get it, God, thank you and I’m so sorry for not getting it before.”

I wish the Baios every happiness, enjoying their wonderful baby girl and thanking God everyday in every way.

Blessings always,
Lisa

Thanks God!!
I will blessing for Bailey’s health. Its well.

Thank you so much Heather! It means a lot that Lily’s story can continue to help others. Your prayers are also greatly appreciated – God is good!

To Lily’s mom: you all deserve a ton of credit and Lily is a little warrior. It’s great that the Baios can help bring more awareness to something you all have been battling for so many years. My prayers and thoughts go out to you and your family.

I am a New Grandparent at 40yrs old and I just adore My Grandaughter more then anything in this world and when I read the story about Scott (whom I grew up watching on TV) I cryed also. That is a lot to go threw for a Baby and Parents. I am the Family member who right now has inherited everything from Diabetes to Spinal Stenosis to Thyroid to Heart Diease and I hope My Grandaughter lives a Healthy life as I continue to let her Dr know what happens throughout mine so that the cycle doesn’t happen to her, as giving blood and all those test are even hard for an adult. Love and Support is What I see the Baio’s giving there Gift from God and they are so Blessed. I have donated in My Grandaughters Name and I wish the Best to anyone who has gone though anything and will go through any Problems with there Little Ones as they are so very Precious. Thank You for letting me Share.
Take care
Adriamarie