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HopeforEvie

€43,810 of €60,000 goal

Raised by 974 people in 26 days
Hope For Evie

Our daughter Evie born on 18th October 2018, she was perfect in every way.

At 5 hours old, Evie was admitted to the special care unit with hypoglycemia symmetric. IUGR

3 days old we took Evie home, thinking everything was ok and we had a perfectly healthy baby girl, Evie struggled to gain weight and at her 6 week check-up raised alarms to the doctors, to be microcephalic.

March 7th, the day our lives changed, as we faced the worst possible news. Evie's missing a large part of her X-Chromosome and was diagnosed with a RARE condition called...Microcephaly with Pontine Cerebellar Hypoplasia, with mutation on her cask gene. This can cause a wide variety of problems that include seizure disorder, development delays, intellectual disabilities, facial distortions. Girls born with a defect on their cask gene, often do not walk or have extreme difficulty walking and are often non-verbal.

Evie has spent many day/nights in hospital.

Evie requires physiotherapy, occupational therapy and speech & language therapy.

Evie's condition is so rare and not by any means curable, with very little knowledge in Ireland, we looked into a lot of research to try and get our little girl the care she needs.

Found a doctor, an assistant professor in Virginia and the leader of perhaps the only research team in the world, that explores the role of the cask gene in neurological disorders. His team research has shown the aggressive "burst" therapy helps these patients significantly improve their development, for that reason we have decided to enroll for this program , in order to obtain the best for Evie.

It's a 4 week program, with very intense therapy. Evie shows so much promise already and I know this will give her the best chance in life. 

Evie has a smile that would brighten up anyone's darkest day, such a happy little girl.

With the help of you, we are hoping to raise money to help take Evie to Virginia. It is with great appreciation that we accept any donation.


Many Thanks,
Evie, Emma & Keith

xxxx

Follow Evie story on: https://www.facebook.com/HopeforEvie-2335287943426336/?modal=admin_todo_tour

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Thank you thank you thank you ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
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This is unbelievable we really can’t thank everybody for the support and donations to get are beautiful princess the treatment she needs. It’s been spread all around the world. All thanks to the help of u guys. Once again thank you from the bottom of out hearts. Love Evie Emma Keith ❤️❤️❤️❤️❤️
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Me and Emma are in shock at the support and donations from everyone in such a sort space of time. It really shows the love and support for a daughter evie. Thanks again everyone #hopeforevie
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We would just like to thank everyone for there support and donations so far we can’t thank you enough ❤️❤️❤️❤️❤️
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€43,810 of €60,000 goal

Raised by 974 people in 26 days
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€10
Anonymous
2 hours ago
LS
€10
Laura Scully
5 hours ago
€50
Anonymous
8 hours ago
BD
€20
Brenda Dunne
9 hours ago
EC
€20
Eoghan Clogher
10 hours ago
GB
€100
Gemma Byrne
16 hours ago
SF
€100
Sarah Fagan
1 day ago
€250
Paul Dempsey
1 day ago
A.
€500
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1 day ago
CS
€50
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1 day ago
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