The best Christmas present we’ve ever had
 Four-year-old Maia suffers from Aicardi Syndrome. It’s a rare neurological condition that takes hold in the womb and results in abnormalities and deficiencies of the brain and eyes, as well as causing regular epileptic fits.
Seizures
The condition’s severity differs in each case but, unfortunately, Maia’s symptoms are among the worst.
She is blind and will never be able to walk or talk. She has several seizures a day which vary from mild to severe and can only be partly controlled by medication.
For Anesti and Marina, realisation that their new-born was seriously ill hit them hard. Anesti said, “Aicardi Syndrome is noticeable pre-birth but we were never aware at any point that there was a problem.
“But we realised quite quickly after the birth — just a couple of days after Maia was born — that there was something wrong. She never opened her eyes and refused to feed. We were in a complete daze because we never saw it coming.”
While Maia was sent for a series of tests and scans, her parents were left to worry for three months before an official diagnosis was made. When they were given the news they were in a state of shock and immediately looked at themselves as perhaps being at fault.
Anesti said, “We were told the condition could be brought on by any number of things so we immediately asked ourselves if we had caused it.”
Never peaceful
Marina added, “We were told it could have been a lack of oxygen or alcohol or drug related — but it certainly couldn’t have been either of the last two.”
Although Maia’s seizures mean she is never completely peaceful, she attends nursery and is looking forward to going to Kilpatrick School, Clydebank next year.
Anesti said, “Maia can tell when she is going to nursery and perks up a lot. She loves the music classes they have and also loves going into the swimming pool. They fit her in a special float.”
Anesti and Marina are grateful for the day they first heard about Rachel House and immediately made inquiries about becoming part of the CHAS family. They admit it has changed their lives as well as Maia’s since they started attending just over a year ago.
Anesti said, “Probably the greatest thing it gives Marina and I is a night of uninterrupted sleep. We’re usually up three or four times a night due to Maia’s seizures and she usually has a big seizure every four or five nights that requires emergency medication — so to get a full night’s sleep every now and again is indescribable.
“She also loves being around other people and getting attention — and she certainly gets plenty of that in Rachel House!
“It also gives her mum and I the opportunity to talk with other parents who are in a similar situation and help and support each other.”
Now that permission for the second hospice has been granted, the Davenhills are delighted.
Anesti concluded, “The news couldn’t have come at a better time. It’s a terrific Christmas present
for us and everyone around the country who has been fighting for this for so
long.”
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You can e-mail us at:
hospice@sundaypost.com
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Marina (back) and Maia went along to the planning permission meeting at Alexandria Parish Church
last Tuesday, where they met CHAS chief executive Agnes Malone and Councillor Ronnie
McColl, chairman of the National Park Authority.
