About Izzy

26 Apr

Isabella

That beautiful baby girl is Isabella.

She looks so helpless, so sweet, so fragile. Don’t let the photo fool you. Isabella is the bravest, toughest little girl you could ever meet. She is much stronger than you or me. She has to be…

Isabella was born on 23rd February 2011. Each minute since then has been a constant struggle. Izzy fights to survive every single day and every day she wins. That is strength.

The first few days of Isabella’s life saw her hit with a series of devastating blows…

During birth the umbilical chord wrapped around Isabella’s neck. That’s pretty common and only as a precaution she was taken to intensive care. Still, her parents, Fran and Sam, were beside themselves with worry.

Then the doctors found fluid on her brain.

Izzy began to suffer violent seizures. She was transferred to the Children’s Hospital where she underwent CT and MRI scans.

Can you imagine what it’s like to see your little one subjected to all of that suffering in the first few hours of her life? At first the answers were painfully slow to come. Sam and Fran just wanted to know what was causing their precious little girl all of this pain. They would give anything to make it stop.

When the answers finally came, it was worse than anyone could have imagined…

Izzy was diagnosed with Aicardi Syndrome. You have probably never heard of it. Isabella’s parents hadn’t. This is because Aicardi Syndrome is extremely rare. There have only been a few hundred reported cases around the world. It is a genetic brain disorder that typically only affects little girls.

The doctors explained that Isabella was born without a vital piece of her brain and that the seizures were only the beginning…

Isabella would need constant care and attention every day of her life. She would need to take a range of powerful medications to manage the seizures. She wouldn’t develop like other children. Everyday of her life will be a constant struggle for her and her family….and eventually Isabella’s life will be cut short because of this crushing condition.

While other children will begin to crawl and walk and laugh and talk and smile in
their first few years, Isabella will be left behind…

Isabella will never see like you and me; she is more or less blind and can only recognise light and dark. Isabella cannot eat like other children and she will need to be fed through a tube directly into her stomach. These things can’t be changed.

Isabella may never pass the most basic developmental milestones. Even the simplest things that we all take for granted could remain beyond her. She may never be able to reach out to Fran and call him ‘Daddy’. She may never be able to walk hand in hand with Sam. She may never be able to go to school or hold a toy or sit up on her own. She may never get to do these things…

But that’s still not the full picture. With your help, Izzy might do all those things…

There is always hope. Isabella will never be independent and she will always need around the clock care. But there are so many wonderful things that Isabella could accomplish; she might learn to sit up on her own, she might be able to walk with assistance, she might learn how to say ‘Daddy’ and ‘Mammy’. She might be able to smile…

It might sound strange but Isabella is lucky. Isabella was born into a family who will give her all of the care and support and love that she deserves. Fran and Sam are determined to make every day of Isabella’s life as joyful and as happy as it can be. They will do the very best that they can to ensure that Isabella receives everything she needs.

There are lots of things that can be done to make Isabella’s life better but often the best treatments are the most expensive. Fran and Sam are not wealthy people and because Aicardi Syndrome is so rare, there are no big charities that they can turn to
for help…

….but they don’t complain. Isabella is a blessing on their lives. They feel the love in her touch and she feels their warmth and devotion when she clings to them. Every day is tough but every day is worth it.

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