Irish family sleep beneath the stars as part of a bucket list for Ali (5) who is living with a devastating form of epilepsy
Published 14/04/2015 | 12:25
An Irish family has created a touching bucket list to help them make the most out of the time they have with their daughter who is living with a devastating form of epilepsy.
Ali Byrne (5) was diagnosed with Progressive Myoclonic Epilepsy, an extreme strain of the condition which does not respond to medication and to which there is no cure.
The little girl is now in palliative care in Dublin’s Temple Street Hospital as her condition means she now suffers from severe mental and physical disabilities.
Despite the uncertainty surrounding her future, the Byrne family has created a bucket list which is helping them make the most out of the time they have with Ali.
Ali’s mum Bernadene Byrne said: “We decided early last year to come up with a bucket list for Ali when we realised the prognosis for Ali’s condition.”
“The future for Ali is uncertain to a degree as we know she is going to continue to decline. Her condition will continue to get worse which would mean more time in Temple Street,” she said.
The bucket list has already seen Ali sleep beneath the stars with her family and visit Disney Land Paris with her sisters Elisa (13) and Thea (8).
“The stand out moment from Ali’s bucket list was the weekend when we slept underneath the stars on the beach and we brought the girls surfing.
“We also watched the sunrise which was very magical,” she said.
The bucket list has also seen Ali become the guest of honour at a Princess Party and send a message in a bottle in Wexford.
The mum of three revealed how difficult it was to tell her daughters about Ali’s prognosis.
“Ali has two older sisters. Elisa is the eldest. She is 13 and Thea is 8. They love each other so much. It’s lovely to see them together. They have a very special bond they’re very close.”
“I had to have a chat with Thea recently. She was quite shocked when I told her that unfortunately Ali isn’t going to get better. When I told her, her reaction was, ‘Well you have to have some hope. Doctors don’t always know everything. I’m still going to hope that everything is going to be okay.’
“The funny thing was then that her plan for the future is that the pair of them are going to live together with a golden retriever,” Bernadene said.
Although Bernadene can express nothing but gratitude to the hard working nurses and doctors in Temple Street Hospital, she believes the services let her family down.
“The hospital is amazing. The doctors and nurses treat Ali as if she was one of their own but the facilities really let us down,” she said.
Temple Street’s annual Great Irish Bake is on Friday and funds raised will be put towards building a new Neurology and Renal Outpatients Unit in the hospital which will greatly help children like Ali and her family.
Chief Executive Denise Fitzgerald stressed that urgent funds are needed to help make build a unit which plays host to specialist equipment, vital to Irish children in Temple Street.
“Temple Street has some of the best doctors and nurses in the world but without specialist facilities and equipment it is simply not enough.
“Over 145,000 sick children from all over Ireland are treated in the hospital every year. These children cannot wait. They need urgent help and care now.
“The Great Irish Bake raises over €150,000 every year, helping to make Temple Street a better place and every day we witness the difference fundraising makes. So please everyone - bake it, buy it or sell it for our little fighters!”
For more information on the Great Irish Bake for Temple Street visit: www.templestreet.ie