It is a little bubble you’re in down there!

Ella was diagnosed with Acute Lymphoblastic LeukaemiaElla was diagnosed with Acute Lymphoblastic Leukaemia when she was just 2½ years old. Her mother Elaine explains how a family weekend at Barretstown Therapeutic Recreation Programme made them all feel like a normal family again:

“Ella got a temperature just before Christmas, and started limping with pains in her leg, until eventually she stopped walking altogether as it was too painful. We knew something was wrong and on our fourth visit to hospital we were told to go to Crumlin where she was diagnosed with leukaemia on 2nd January, 2010.

Our whole world stopped and life as we knew it was suddenly no longer.Her leukaemia was categorised as high risk which meant a year of intense chemotherapy, meaning we were in Crumlin probably 5 days a week for her to receive treatment. We were constantly watching what we were doing and thinking ahead, deciding well we can’t go there or we can’t do this as a family as one of us had to stay at home with Ella and one would go with the other children.

Then in October we went to Barretstown when Ella was 10 months into treatment. We were going down to Barretstown really more for our other three children at that point because all six of us hadn’t been anywhere together during that time. We didn’t really know what to expect, but we were all excited going and when we got there on the first day everyone made such a fuss of welcoming us that we knew immediately that it was a very special place.

The major thing for Ella that weekend was we hadn’t let her out of our sight since she was diagnosed. Nobody else had minded her, nobody had looked after her, nobody like grannies, granddads. Ella was always with my husband or me. However when we were going to activities on Saturday morning (we knew that the boys would be going into group activities) I didn’t realise that Ella would get to go off on her own as well. She was put in her little line and went off in her group and not a bother to her, she was delighted to be going off, she felt this is my little group. She gave a smile and gave us a little wave and I think it did her the world of good to be able to go off on her own and play with little kids her own age which she hadn’t had a chance to do because she had been in a bubble at home for 10 months.

Ella’s three brothers (Harry, Jack and Michael) also went to sibling camp in Barretstown for a week during the summer. They made great friends with children from all over Europe and although they don’t go to camp and talk about their sick brothers and sisters they understand that they have sick brothers and sisters and they know that Barretstown is a special place for them to go to, that they’ve had a tough time too and life has been hard for them as well.

Barretstown got us rid of all our bad memories from when Ella was sick and made us forget about it, even for me and my husband, even if we only forgot about it for that weekend when we were down there because it is a little bubble you’re in down there, it’s a little world of its own, that you do forget about everything else that’s going on outside and you just have fun and laugh and really you need that laughter when everything else is so tough!

When your child is diagnosed with a serious illness your whole life revolves around hospitals. Everything else in life is put on the back burner. But when you go to Barretstown, you meet other families who are going through what you’re going through.

Ella loved being the centre of attention and getting up on that stage in the dining hall and singing and dancing after every meal, she just loved that. She’d sing the songs for weeks on end afterwards and she loved dressing up and putting on little shows, and meeting little friends, you know, normal stuff that children probably would do but hadn’t been a part of her life for a long time.”

Elaine, mother of Ella (3), living with Acute Lymphoblastic Leukaemia, attending Barretstown Therapeutic Recreation Programme, Ireland

Page created: 16/02/2013
Page last updated: 02/04/2013
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases