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#abetterlifeforlivie

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thebronze14 View Drop Down
Jack Charlton
Jack Charlton

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    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


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[​IMG]TEAM FUNDRAISER
Team Livie and 6 others are organizing this fundraiser.
We are raising funds for the treatment and care of Olivia, our beautiful baby girl. Little Livie has been diagnosed with a rare and serious genetic neuromuscular condition called spinal muscular atrophy (SMA) type 1. SMA is caused by a gene deletion which results in deterioration of Livie’s nerve cells connecting her brain and spinal cord to her body’s muscles. There is no cure and Livie has its most severe type. Livie’s muscles used for activities such as crawling, walking, sitting up, moving her head, and even swallowing and breathing, are becoming progressively weaker and shrinking. Without any treatment, little Livie’s condition would continue to deteriorate and it would be unlikely that she would live past her 2nd birthday. Every child with SMA is different and little Livie’s future is very uncertain.

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.
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Croftman View Drop Down
Liam Brady
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Croftman Quote  Post ReplyReply Direct Link To This Post Posted: 12 May 2020 at 1:45pm
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
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Liam Brady
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Huggybeer Quote  Post ReplyReply Direct Link To This Post Posted: 12 May 2020 at 1:51pm
Done ,, Great Cause, could be any of our kids
Getting old and intolerant
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Robbie Keane
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Double Maxim Quote  Post ReplyReply Direct Link To This Post Posted: 12 May 2020 at 2:07pm
Excellent cause hope the target is achieved.
Double Maxim without doubt the greatest drink in the world
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thebronze14 View Drop Down
Jack Charlton
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thebronze14 Quote  Post ReplyReply Direct Link To This Post Posted: 12 May 2020 at 2:12pm
Originally posted by Croftman Croftman wrote:

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
Yeah Croftman they have. Keith said they were extremely helpful and kind
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Robbie Keane
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Double Maxim Quote  Post ReplyReply Direct Link To This Post Posted: 12 May 2020 at 2:27pm
Originally posted by thebronze14 thebronze14 wrote:

Originally posted by Croftman Croftman wrote:

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
Yeah Croftman they have. Keith said they were extremely helpful and kind
 

Thumbs Up
Double Maxim without doubt the greatest drink in the world
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Liam Brady
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Post Options Post Options   Thanks (0) Thanks(0)   Quote max Quote  Post ReplyReply Direct Link To This Post Posted: 12 May 2020 at 3:26pm
I'm running a Bundesliga last man standing starting Saturday, going to donate half the pot to .

#abetterlifeforlivie

 

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 Thumbs Up
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Liam Brady
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Patman Scoop Quote  Post ReplyReply Direct Link To This Post Posted: 12 May 2020 at 4:13pm
done ,  best of luck to them , beautiful little girl , couldn't imagine what they must be going through..
Why no wine??!
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Croftman View Drop Down
Liam Brady
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Croftman Quote  Post ReplyReply Direct Link To This Post Posted: 12 May 2020 at 4:40pm
Originally posted by thebronze14 thebronze14 wrote:

Originally posted by Croftman Croftman wrote:

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
Yeah Croftman they have. Keith said they were extremely helpful and kind
Thumbs Up
They're good people 
Some people just deserve a slap
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MayoMark Quote  Post ReplyReply Direct Link To This Post Posted: 12 May 2020 at 4:55pm
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...
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thebronze14 View Drop Down
Jack Charlton
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thebronze14 Quote  Post ReplyReply Direct Link To This Post Posted: 12 May 2020 at 7:58pm
cheers guys for the donations and the sharing etc, great to see people get behind this. Keith and Karen are really grateful
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Kevin Kilbane
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Yiksheemash Quote  Post ReplyReply Direct Link To This Post Posted: 13 May 2020 at 9:44am
done,
well done for sharing, hope they get to their target Clap
In my country we fak, my wife she isa dead
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Gaz Quote  Post ReplyReply Direct Link To This Post Posted: 13 May 2020 at 10:27am
Done - God love them
I dont email the count anymore, its been 9 months : ( He even sent me a YBIG scarf for my Birthday
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ShamtheRam Quote  Post ReplyReply Direct Link To This Post Posted: 13 May 2020 at 11:31am
Donated there. God love the poor little girl and her family. Looks such a happy child.
It takes a big man to cry, but it takes an even bigger man to laugh at that man.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donegalman Quote  Post ReplyReply Direct Link To This Post Posted: 13 May 2020 at 1:56pm
Donated there too hopefully they meet the target and the same goodwill as the Do it for Dan campaign.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sham157 Quote  Post ReplyReply Direct Link To This Post Posted: 13 May 2020 at 2:35pm
Originally posted by Donegalman Donegalman wrote:

Donated there too hopefully they meet the target and the same goodwill as the Do it for Dan campaign.

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.


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sham157 Quote  Post ReplyReply Direct Link To This Post Posted: 13 May 2020 at 2:39pm
@donegalman, only quoted your message so I could post the pic on the phone. The option wasnt available otherwiseThumbs Up
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donegalman Quote  Post ReplyReply Direct Link To This Post Posted: 13 May 2020 at 3:24pm
Originally posted by Sham157 Sham157 wrote:

@donegalman, only quoted your message so I could post the pic on the phone. The option wasnt available otherwiseThumbs Up
If only it was a nice vintage Ireland football jerseyCryCry
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