Help Baby Ann Florence Clifford beat HLH
Donation protected
Please Note: This is Seanie here. I will try to give you updates every few days or so, but in the space of 1 week we are bombarded with terms/info/realities that are hard to fathom. My friends and family will be taking care of the rest. I know we are not the only family in this position. I want to thank everyone for their support and prayers. Ann just had her first Chemotherapy today, so as you can imagine, we are quite anxious.
What Happened?
After moving back from Spain to Ireland in Oct, 2019, Sean, Ruth and Ann Florence had settled in Seanie's home county of Kerry and were looking forward to starting a new chapter in their life come January.
Ann was taken to Hospital on the 8th of January with suspected Flu, which almost every child seems to have. She immediately became extremely unwell, and the doctors were baffled.
During 48 hours of procedures/tests/and having a preliminary diagnoses of Leukemia, Ann was rushed to Crumlin Children’s Hospital in Dublin, where she was preliminary diagnosed with an ultra-rare and life-threatening condition called primary HLH. There is approximately 1 Child a year diagnosed with it in Ireland.
To stabilize her condition, bring down the swelling in her Liver and Spleen, and ensure she did not go to ICU, Ann was put on a course of treatment that included; Steroids, Chemo, Blood Products and Antibiotics. Seanie, Ruth and family are in the hospital, at her bedside 24/7.
For now, her condition has stabilized (it can change for bad or good at any time), and she will be starting Chemotherapy and many other drugs on the 16th of January in order to try and control her own immune system from attacking here. It's quite a complex illness. A real nasty piece of work.
24/01 -Update: As we go along, we are going through every day with uncertainty, and different info and good news mixed with more uncertainty. After getting set up to go to the UK, there is now a real possibility that they may be able to treat her in Hospital, but we are awaiting results back from the UK.
If nothing changes, we will still need to take Ann for a Bone Marrow Transplant as the only cure for HLH is a Bone Marrow Transplant. I will update you more as we know it.
Already, there are bills mounting up and Sean and Ruth's life has effectively changed from a quite one in Kerry, to an extended stay in Dublin, (and possibly) a further stay in Newcastle and then back to Dublin/Ireland after the Bone marrow Transplant for 1-2 years. Everything is changing day by day, and sometimes we think we are learning less as opposed to more.
The funds will be used for -
Every day items/Bill's etc whilst staying in Dublin until Ann Florence is recovers. This road is changing day by day.
IF NEEDED: Transport and Accommodation whilst in the UK and for going back and forth.
If you could also simply send good wishes and prayers for Ann's recovery, that would be great. 100's of people were praying for her this week and so much went right, when it could have gone the other way.
The situation is urgent but there is great hope that Ann Florence will get over this and go on to have a normal life. If she needs it, the costs of the transplant in the UK itself is covered, which will be a blessing in itself.
This page was set up to take some of the Financial Strain of Seanie and Ruth so they can concentrate on getting their baby well again. It is every parents worst nightmare, but there is a great Medical Team, a realistic way forward and the power of Prayer, God, Friends and Family.
What Happened?
After moving back from Spain to Ireland in Oct, 2019, Sean, Ruth and Ann Florence had settled in Seanie's home county of Kerry and were looking forward to starting a new chapter in their life come January.
Ann was taken to Hospital on the 8th of January with suspected Flu, which almost every child seems to have. She immediately became extremely unwell, and the doctors were baffled.
During 48 hours of procedures/tests/and having a preliminary diagnoses of Leukemia, Ann was rushed to Crumlin Children’s Hospital in Dublin, where she was preliminary diagnosed with an ultra-rare and life-threatening condition called primary HLH. There is approximately 1 Child a year diagnosed with it in Ireland.
To stabilize her condition, bring down the swelling in her Liver and Spleen, and ensure she did not go to ICU, Ann was put on a course of treatment that included; Steroids, Chemo, Blood Products and Antibiotics. Seanie, Ruth and family are in the hospital, at her bedside 24/7.
For now, her condition has stabilized (it can change for bad or good at any time), and she will be starting Chemotherapy and many other drugs on the 16th of January in order to try and control her own immune system from attacking here. It's quite a complex illness. A real nasty piece of work.
24/01 -Update: As we go along, we are going through every day with uncertainty, and different info and good news mixed with more uncertainty. After getting set up to go to the UK, there is now a real possibility that they may be able to treat her in Hospital, but we are awaiting results back from the UK.
If nothing changes, we will still need to take Ann for a Bone Marrow Transplant as the only cure for HLH is a Bone Marrow Transplant. I will update you more as we know it.
Already, there are bills mounting up and Sean and Ruth's life has effectively changed from a quite one in Kerry, to an extended stay in Dublin, (and possibly) a further stay in Newcastle and then back to Dublin/Ireland after the Bone marrow Transplant for 1-2 years. Everything is changing day by day, and sometimes we think we are learning less as opposed to more.
The funds will be used for -
Every day items/Bill's etc whilst staying in Dublin until Ann Florence is recovers. This road is changing day by day.
IF NEEDED: Transport and Accommodation whilst in the UK and for going back and forth.
If you could also simply send good wishes and prayers for Ann's recovery, that would be great. 100's of people were praying for her this week and so much went right, when it could have gone the other way.
The situation is urgent but there is great hope that Ann Florence will get over this and go on to have a normal life. If she needs it, the costs of the transplant in the UK itself is covered, which will be a blessing in itself.
This page was set up to take some of the Financial Strain of Seanie and Ruth so they can concentrate on getting their baby well again. It is every parents worst nightmare, but there is a great Medical Team, a realistic way forward and the power of Prayer, God, Friends and Family.
Fundraising team: The An Florence Clifford Fund (5)
Seanie Clifford
Organizer
David Masterson
Team member
Dylan Clifford
Team member
Linda Brennan
Team member
Daniel Gradzikiewicz
Team member
