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To: Our government and HSE

Newborn Screening Expansion

Newborn Screening Expansion

Increase newborn screening from 8 conditions to 40 as per best International practice.
Currently 42 children are born in Ireland each year with a condition that could be detected at birth and treated but is not.
1 baby every 8 days......

Why is this important?

As parents to 2 terminally ill boys, Cathal (4) and Ciaran (3) we do not want any other parents to suffer our pain unnecessarily. We want our boys to be amongst the last born in Ireland with a disease that could have been treated at birth.

Our sons have a rare condition Metachromatic Leukodystrophy (MLD) with a life expectancy of 5 yrs.
Through a trial gene therapy treatment program in Milan, Italy, we were able to treat Ciaran who is now 2 years post therapy and doing well. For Cathal however there was no chance of treatment be cause once the condition had been diagnosed it was to late.

Through our experience in Italy we learnt of their program to expand their newborn screening program from 4 diseases to 40 in 1 year.
This has been a huge success and will save so many lives and so much suffering that we must follow their lead and protect our children here in Ireland.

The Italian government has presented this information to the EU parliament and their ministry of health and the charity organisations who drove this change have openly offer their assistance to us to copy their model in this expansion.

I have written to every politician in Ireland and shared this information and the relevant contacts with our HSE.

But I have been advised from the people who made it happen in Italy that public will and pressure on the government are the best ways to effect change.

All the studies and validations for all 40 diseases they now screen for are available to use, along with the financial cases for each disease.
Making this change will also save millions of euro!

1 in 1500 births in Ireland will have 1 of these detectable and treatable conditions. 1 baby every 8 days.

We have watched our son Cathal grow to be a beautiful 2 year old boy with no problems and then slowly fade over the last 3 yrs. He is fully paralyzed now and close to the end.

We cannot bear the burden of knowing there will be other parents like us unless their is an immediate action taken on this.

Please take the time to sign this petition and to share it with everyone and anyone you can.

There is a wonderful opportunity to make a huge change here in Ireland,
saving the lives of children and the suffering of so many families.

https://www.facebook.com/themartinfamilytrust

Ireland

Maps © Stamen; Data © OSM and contributors, ODbL


Reasons for signing

  • Listening to Lesley Martin on the radio talking about his sons - heart breaking.
  • We had genetic counselling about 14 years ago as my husband had 2 sister's with leukodystrophy. We were told at the time that there was no genetic screening available. This screening would be so valuable to families like ours
  • If there is a chance of detecting a condition with the possibility of successful treatment, there shouldn't be any reason why not to do it. Working with people with disability with a constant struggle of resources and support for parents is devastating to witness.

Updates

2019-07-21 15:04:56 +0100

10,000 signatures reached

2019-05-21 13:16:13 +0100

Hi everyone the petition has done really well and we are presenting it along with our proposal inside the Dail av room on Wednesday the 29th May at 1 o clock to as many dail members as possible.
Can you please take time to email and encourage your local tds and senators to attend.
There is great solution but it needs big interest and cross party support.
I think it will work but we need as much interest as possible.
Thanks👍🤞

2019-04-30 23:57:06 +0100

5,000 signatures reached

2019-04-25 18:13:18 +0100

1,000 signatures reached

2019-04-25 14:03:04 +0100

500 signatures reached

2019-04-25 12:12:33 +0100

100 signatures reached

2019-04-25 11:49:44 +0100

50 signatures reached

2019-04-25 11:38:16 +0100

25 signatures reached

2019-04-25 11:31:26 +0100

10 signatures reached