Every parent hopes for the day they hear their child say “mama” or “dada”. To have their child say “I love you”, or have them walk towards them for a hug. Unfortunately, some children will never have a voice to express their basic needs or wants.
On Tuesday, 29 September, our beautiful daughter Fiadh, at 5 months old, was diagnosed with a rare condition called Angelman Syndrome.
Angelman’s is a neurological disorder, affecting 1 in 20,000. Children with Angelman need extensive therapies to do the things we take for granted, like walking, talking and even swallowing. Other symptoms include lacking sleep beyond 1-2hrs a night and debilitating seizures that can be dangerous. Since they struggle to communicate, health issues quickly become severe and often lead to hospitalisation.
Raising a child with Angelman requires full attention of 24 hours a day, 7 days a week. As a parent there’s no words to express the emotional, physical and financial stress it puts you through.
Therefore, we have made the difficult decision to move to America to seek specialist treatment for Fiadh, where promising drug trials for a cure have commenced. This means separating our family. To give some perspective of just how important these trials are, one participant who was completely non-verbal, has began saying 9 words in a short time. For a child as young as Fíadh, it is critical we get in as early as possible so that we can work towards giving her the best life she deserves. There is no certainty we will get into a trial, but that does not cease our determination.
Currently, our family lives in Australia, however, our visa statuses, neither being citizens, means we aren’t entitled to claim disability insurance in Australia or America. For Fiadh to access essential specialist treatment, which includes occupational therapy, physiotherapy and speech pathology, we are required to pay for this ourselves. While these methods can and do help, we intend to give Fiadh the very best shot at life we can – and potentially see her contribution, via medical trials in the US, help others like her.
The money we raise will pay our travel costs, lawyers' fees and visa administration costs, ongoing therapies and treatment. We will also need to cover our day-to-day expenses of setting up a life in a new country.
We realise we aren’t alone in our struggle with Angelman Syndrome, and there are families all over the world needing help. To ease their burden we’ve decided to contribute 10 per cent of all donations we receive to The Angelman Foundation or Angelman Association Australia. In the hope any family might have access to support and the Foundation can continue its work in finding a cure.
People with Angelman Syndrome have an overall happy and excitable demeanor. An individual with AS will light up a room with their smile and laughter. Fíadh is the light of our lives and even though our journey has not been easy, she gives us the passion and drive to help her find her voice. Anyone who has been able to meet our beautiful Angel will know how incredible her smile and her love is and how much happiness she brings to people.
We ask if you are unable to donate please share. Our heartfelt thanks and gratitude for your consideration x
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