#abetterlifeforlivie |
Post Reply | Page 123> |
Author | ||
thebronze14
Jack Charlton Derry City Til I Die Joined: 22 Feb 2011 Location: Dublin/Donegal Status: Offline Points: 7165 |
Post Options
Thanks(0)
Posted: 12 May 2020 at 1:12pm |
|
I asked an admin if it's ok to post this here and he said yeah but if not can delete/move if necessary
Found out the devastating news this weekend that my oldest friend, who I also lived with for 4 years received some awful news regarding his young baby. Have a read anyway and donate and share if you can. Thanks guys. https://www.gofundme.com/f/a-better...urce=customer&utm_campaign=p_lico share-sheet Team Livie and 6 others are organizing this fundraiser.
Treatment options for little Livie are very limited. Our best hope for a better life for Livie is a once-off gene therapy called Zolgensma, which is currently only available in USA. It costs approximately US$2,100,000. Studies have shown that Zolgensma can substantially improve quality of life. Livie's antibody test qualifies her for the treatment. We are against the clock as Zolgensma is only available to children under the age of two years. Little Livie’s Story Little Livie was born on the 26th August 2019. We have never felt a love like this. It was incredible for us to see our first child smile, laugh and babble for the first time and watch her develop her little bright, affectionate and loving personality. Livie brings such joy and happiness to our lives every day and her smile can brighten the whole room even on the rainiest Irish day. We grew concerned as Livie missed some of her development milestones. We contacted her GP and were eventually referred to Crumlin Children’s Hospital. Our world changed forever on 9th April when little Livie was diagnosed with SMA type 1. This condition affects approximately one in every 10,000 babies. It had already been such a hard time for our family with the COVID-19 lockdown. Due to hospital policy on social distancing, Karen (Livie’s mum) was alone when given the diagnosis and Keith (Livie’s dad) was alone when he heard the diagnosis over the phone. It is something that will stay with us and our family for the rest of our lives. We were left devastated and one of the hardest parts of this process is being isolated without support from our family and friends during this difficult time. SMA does not affect Livie’s cognitive ability. She remains a bright, alert and bubbly little girl, curious about everything she sees and desperate to experience life. Livie’s smile and laugh are infectious. She loves engaging with people and wants to be in the thick of every conversation around her. Normal infections and illnesses such as a chest infection can be very serious for Livie, possibly life-threatening. The current COVID-19 pandemic is so worryingly dangerous for Livie. Karen will be Livie’s full time carer as Livie needs support all day and every day. Her days and weeks are busy with medical appointments and check-ups. Livie has received her first dose of another treatment called Spinraza through a lumbar puncture in Ireland. We remain hopeful that Spinraza will prolong Livie’s life and allow Livie to gain a degree of head control and sit with extra support. We have been advised that Livie will still need respiratory and feeding intervention to survive. She is already struggling with her breathing and coughing. She needs to wear an oxygen mask every night. This is very uncomfortable for Livie and she struggles to sleep with it. It is very unlikely that Livie will ever stand or walk. We are fundraising for Zolgensma because we could never afford to pay for this treatment by ourselves. Our dream for Livie is to give her the best chance at life possible. Zolgensma is our best hope to do this. If we are unable to raise enough funds to pay for little Livie’s treatment, we will put all donations towards Livie’s care with the hope of giving her the most comfortable and happy life possible. |
||
Croftman
Liam Brady Joined: 18 Aug 2014 Status: Offline Points: 2554 |
Post Options
Thanks(0)
|
|
Same illness as young Dan (Do It For Dan) has. Poor child. It's a huge amount of money to raise to save your childs life. Hope it works out for them
Have the fundraising team spoken to Dan's team? I'm sure they'd glad to offer any advice they have, likewise the parents Edited by Croftman - 12 May 2020 at 1:47pm |
||
Some people just deserve a slap
|
||
Huggybeer
Liam Brady Joined: 29 Mar 2011 Location: Ireland Status: Offline Points: 1429 |
Post Options
Thanks(0)
|
|
Done ,, Great Cause, could be any of our kids
|
||
Getting old and intolerant
|
||
Double Maxim
Robbie Keane Joined: 24 Sep 2008 Location: Sunderland Status: Offline Points: 42899 |
Post Options
Thanks(0)
|
|
Excellent cause hope the target is achieved.
|
||
Double Maxim without doubt the greatest drink in the world
|
||
thebronze14
Jack Charlton Derry City Til I Die Joined: 22 Feb 2011 Location: Dublin/Donegal Status: Offline Points: 7165 |
Post Options
Thanks(0)
|
|
Yeah Croftman they have. Keith said they were extremely helpful and kind
|
||
Double Maxim
Robbie Keane Joined: 24 Sep 2008 Location: Sunderland Status: Offline Points: 42899 |
Post Options
Thanks(0)
|
|
|
||
Double Maxim without doubt the greatest drink in the world
|
||
max
Liam Brady My new name is Wax Joined: 08 Jan 2012 Status: Offline Points: 1883 |
Post Options
Thanks(0)
|
|
I'm running a Bundesliga last man standing starting Saturday, going to donate half the pot to .
Will start a new thread if OK with mods, Accept money via revolut or bank transfer 10 er a head and put up the list on Friday evening |
||
Patman Scoop
Liam Brady Joined: 05 Apr 2009 Location: Saint Pierre Status: Offline Points: 1163 |
Post Options
Thanks(0)
|
|
done , best of luck to them , beautiful little girl , couldn't imagine what they must be going through..
|
||
Why no wine??!
|
||
Croftman
Liam Brady Joined: 18 Aug 2014 Status: Offline Points: 2554 |
Post Options
Thanks(0)
|
|
They're good people
|
||
Some people just deserve a slap
|
||
MayoMark
Moderator Group The NEW angrier Freewheeler Joined: 27 Jan 2009 Location: Castlebar Status: Offline Points: 26312 |
Post Options
Thanks(0)
|
|
Dreadfully sad. Shared with mates who I'm sure will throw in a few bob.
Shocking amount of money. Trying to get the message out is important. Because there are incredibly generous people in Ireland.
|
||
They finally did it man... They killed my f**kin' car...
|
||
thebronze14
Jack Charlton Derry City Til I Die Joined: 22 Feb 2011 Location: Dublin/Donegal Status: Offline Points: 7165 |
Post Options
Thanks(0)
|
|
cheers guys for the donations and the sharing etc, great to see people get behind this. Keith and Karen are really grateful
|
||
Yiksheemash
500 Club la la la I don't have a penis. Joined: 01 Aug 2011 Status: Offline Points: 530 |
Post Options
Thanks(0)
|
|
done,
well done for sharing, hope they get to their target
|
||
Gaz
Moderator Group You'll always be Gazsh to me. Joined: 18 Oct 2007 Location: Ireland Status: Offline Points: 11565 |
Post Options
Thanks(0)
|
|
Done - God love them
|
||
I dont email the count anymore, its been 9 months : ( He even sent me a YBIG scarf for my Birthday
|
||
ShamtheRam
Paul McGrath Joined: 05 Apr 2009 Location: Ireland Status: Offline Points: 18126 |
Post Options
Thanks(0)
|
|
Donated there. God love the poor little girl and her family. Looks such a happy child.
|
||
YBIG NPF founder and CEO
|
||
Donegalman
Liam Brady Joined: 16 Jun 2015 Location: Donegal Status: Offline Points: 1650 |
Post Options
Thanks(0)
|
|
Donated there too hopefully they meet the target and the same goodwill as the Do it for Dan campaign.
|
||
Sham157
Moderator Group Joined: 17 Jul 2009 Location: Monaghan/Dublin Status: Offline Points: 33205 |
Post Options
Thanks(0)
|
|
Having a clear out at home lately and found this. I stuck it on a FB group to sell, but if any egg heads here are interested in it, PM me and ill donate the money to this great cause and cover the postage. Not sure what these go for but say €80-€100.
Its a London Irish mid 2000s I think. |
||
Sham157
Moderator Group Joined: 17 Jul 2009 Location: Monaghan/Dublin Status: Offline Points: 33205 |
Post Options
Thanks(0)
|
|
@donegalman, only quoted your message so I could post the pic on the phone. The option wasnt available otherwise
|
||
Donegalman
Liam Brady Joined: 16 Jun 2015 Location: Donegal Status: Offline Points: 1650 |
Post Options
Thanks(0)
|
|
If only it was a nice vintage Ireland football jersey
|
||
Post Reply | Page 123> |
Tweet
|
Forum Jump | Forum Permissions You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum |