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Posts Tagged ‘Olivia Davis Foundation’

Chronic Illness Causes Confusion, Concern and Opportunity To Help Others

Because of our daughter’s health circumstances my husband and I have spent a lot of time in pediatric hospitals, doctor’s offices, rehabilitation centers, youth camps, and at charity fundraisers.  We have had the opportunity to meet interesting people from around the globe who are fighting the same battle we are: desperately trying to save a child they love.

These folks represent nearly every aspect of economic and cultural diversity, all levels of education and different religious beliefs.   And all of us want the same thing – to maximize our child’s potential and make the best of a bad situation.

When you’re the parent of a chronically ill child finding hope and direction can be challenging.  Locating the right medical team for your child can be an overwhelming and frustrating experience.  Reserving energy for other children is a daily grueling battle.  Keeping a marriage together is nearly a miracle.  Working is practically impossible because the demands of caring for your child are extraordinary.

There are many stories I could share about families in need because of a child’s illness and I will be sharing some of them with you through our blog.

When Olivia was finally diagnosed with Rasmussen’s Encephalitis we were devastated.  We knew the only proven treatment was a hemispherectomy to stop the destruction of the disease: essentially removing one-half of Olivia’s brain – one half!!

As a parent this is not what you expect; it is never what you plan for.  It is sickening to consider and mentally process.  It is maddening, frightening, deeply troubling, and very sorrowful.  But it was all we had.  It was hope.  It was a future.  I reminded myself we had been given a choice that could save Olivia.  We had a choice! Not a great choice – but a choice.  We were given a way to save our child.  And I know many parents who would give anything to be in our place. We know many children who would choose our journey instead of theirs if given the chance.

It is because of our families struggles and suffering of many other families facing similar challenges that we’ve met over the past 3 1/2 long years we remain focused on our mission to make something positive out of our own unthinkable situation.

Therefore, we devote “extra energy” toward becoming a financial and inspirational resource for those affected by catastrophic Epilepsy and other chronic disorders.  Through the Olivia Davis Foundation it is our intent to bring hope and inspiration to those who need it most.

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