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The government confirmed today that they are adding this screening to the newborn program. I truly cannot believe we reached this point, but it was your belief in this cause that pushed the decision over the finish line. I will be keeping a close eye on the rollout to make …

March 2, 2013

Too Rare To Care @ newborn screening for glutaric aciduria type 1

Too Rare To Care @ newborn screening for glutaric aciduria type 1

🏆 Won — 603 supporters Verified

Final supporters

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Cathy J.
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Someone
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Suanne
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kim
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Diana G.
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angel h.
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Kem B.
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maggie h.
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Jennifer C.
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social b.
+593 more
Started by Anonymous 13 years, 7 months ago
This is a petition to the Irish Government to add Glutaric Aciduria Type 1 to the list of newborn screening as this is a rare life threatening metabolic disorder. My son Liam has Brain Damage and struggles everyday due to this metabolic disorder that went undiagnosed until he suffered a crisis which changed my 3 month old baby boy from able to disabled overnight !!! This could have been avoided if his disorder Glutaric Aciduria Type 1 was screened for on newborn screening just like most other countries !!! Ireland and Cyprus dont screen for GA1 ... So please please sign this petition so i can hand it to our government and make them hear us !!! The next child diagnosed with this will also be disabled or dead because it wont be caught at birth and treated ... this can really make a difference and even if it only saves the life of just 1 child, 1 family that will make it worth it and that will be a change !!! please sign this in support of Liam and what should have helped him to live without a disability !!! please share and thank you so much @ www.facebook.com/liamtooraretocare

Updates

Reached 500 supporters

January 10, 2013

Reached 100 supporters

January 5, 2013

January 4, 2013

I am honestly overwhelmed by how many of you have stepped up to help Liam. If we can reach that hundred mark soon it will give us a much stronger footing when we finally present these names to the government.

6 Comments

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Anonymous
11 years ago Featured

My son has GA-1 and was diagnosed through Newborn Screening in the US. Due to his early diagnosis and intervention, he is living crisis free.

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Molly Parks
11 years ago Featured

My son has GA-1 and was diagnosed through Newborn Screening in the US. Due to his early diagnosis and intervention, he is living crisis free.

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Sarah Alvarez
13 years ago Featured

This is honestly heart breaking. No child should go through this when there is a simple test that could fix it. Ireland needs to get with the times.

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John Khan
13 years ago Featured

WHY ARE WE NOT SCREENING FOR THIS YET?? Get it done.

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Mark Schneider
13 years ago Featured

My nephew has this and the damage is permanent. We have to make sure no other irish family deals with this pain when it is so preventable.

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Aoife Saunders
13 years ago Featured

Shocking that we are so far behind other countries on this. Poor Liam. Thinking of your family.