Newsletter January 2018

CLDI Newsletter  January 2018

 It has been a while since there was an update so I thought it would be useful to start the new year off with a summary of what has been done since the AGM last year.


One of the major issues, that came to a head last year, was about emergency transfers to the UK. The AirCorps no longer had the ability to do flights in the evening and it was unclear how families would make it to London for lifesaving operations. It had caused great distress to families who were on the waiting list.



Aoife has been working tirelessly on this issue for the last 6 years and had been greatly involved in putting forward the patient and their family’s perspective. In November a solution was found. A private air ambulance service was put in place by the HSE for patients who need transport at night. We look forward to hear how this is working for families.


In December we had a lovely day out to Lullymore Farm. The children got to meet Santy. It was lovely to see children from different families playing with each other. It was also great for the adults to catch up.



At the last meeting we decided to write to Crumlin regarding a number of issues that were raised. We wrote regarding Brexit, CNS cover, Endoscopy and Kasai. The response noted our concerns but did little to address them.


We also wrote to Ryanair, Aer Lingus and City jet in an attempt to get access to their ‘emergency’ fares for families who have to go to London. This was also unsuccessful. If anyone has any contacts in these organizations please let us know. We’ve got to keep trying to get a better system for commercial flights to London for our children.


Some parents raised the issue that they had not been aware of all of the benefits and allowances that were available to them. The list was developed. There has been some discussion about who on the team should distribute it in Crumlin. The document is on the website.


We had hoped to do a family day in Baldonnel in 2017. Due to resource issues the AirCorps were not in a position to accommodate us. However they are hoping to run a family day before the summer to which CLDI members will be invited. We will let everyone know when this happens.



We want to thank Deidre Lyons for all her hard work at updating facebook.


We have had some very generous donations this year.


Amanda Groarke ran the Dublin City Marathon and Laura McCoy ran the Dublin City Marathon in aid of CLDI. The Ladies Day in Mount Juliet also chose CLDI as their charity this year. Finally GoDolphin made a contribution to the Santy day this year. We want to thank all of them.


We have been in touch with CMRF-the charity attached to the hospital. We have set up a fund within CMRF called CLDI. If anyone wants to donate to the hospital directly please tell them it is for the CLDI fund and we will get access to it.

We will still be accepting donations to CLDI directly.


The next meeting Parent Networking Meeting will be in April. The date will follow.


If anyone wishes to add to this please let me know on