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.
Evie, Emma & Keith
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