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Olivia's Story
Written By Stephanie Davis (Olivia’s Mom)

We were a very happy family of four; my husband Bruce and I, our two young daughters Natalie and Olivia. The life we built together seemed perfect. Bruce and I had a loving relationship, two beautiful daughters – we were a foursome that loved to spend time together, travel together and seek adventure – we truly enjoyed being together. But as the girls got older we all yearned for more. What began as a simple discussion about adopting a boy from a foreign country quickly escalated into an all encompassing plan to grow our family.

Eight months later we were all on a plane to Guatemala to meet our new addition. He was 5 months old and beautiful; we loved and needed him as much as he needed us. We spent an unforgettable week with him traveling through Guatemala, learning about his magical country, learning about him, and growing our family. Blessed. We felt very blessed.
Then late at night, on Olivia’s 7th birthday in the middle of this mysterious country something horrible happened. Something that would change our lives forever: Olivia had a seizure.

As I held her in the shower – her shaking seemed endless. She was a ragdoll in my arms; shaking uncontrollably. At the time I thought she was having trouble breathing due to a croupy cough she had been suffering with. I mistakenly thought she was struggling to breathe and that what was causing this crazy shaking. I had no idea this was a seizure. I kept thinking, I can’t believe this is happening in the middle of the night, in the middle of nowhere – so far from civilization. Just breathe Oliva, just breathe!
Her shaking went on for so long I thought it might never end. But by the time my husband had returned from frantically searching for a doctor, she was just about done with this episode. Finally the trembling subsided and she fell asleep in his arms. I let out a long breath . . . it’s over, it’s over, she’s going to be okay. “Over” was exactly what this wasn’t; it was actually just the beginning. The beginning of a long, horrible road. A road filled with detours, bumps, hills, sharp curves, and battlefields. It is a road I never expected to be on, let alone driving.

Since that first seizure in Guatemala, Olivia seized nearly every day for over a year – sometimes 20+ times a day. She was no longer able to attend school, interact with family or friends, and basically never left the house. Her only outing was to the hospital where she was nearly a full time resident. She blew through 12 medications with no relief. She was a mere shadow of the sweet, carefree child she had once been. Eventually she would endure five brain surgeries, hundreds of blood draws, scans, spinal taps and months of therapy – all with a smile on her face and laughter in her heart. And always, always clinging to hope.

A clear diagnosis had been difficult to get. Pathology was confusing, sometimes misleading. During the years of numerous MRI’s, surgeries, and EEG monitoring we were given hope, then it was torn away. More light was seen, only to be followed by darkness. The rollercoaster ride of extreme ups and downs played with our minds, tore our hearts apart and nearly drove us insane. Through this time a very ominous, black cloud hung over our heads. Things were unclear, all the pieces of the puzzle hadn’t come together. Periodically Olivia did well; giving us hope. In August 2008 she finally returned to our local elementary school and we all celebrated.

Then, 5 months later it happened . . . . . . . . . . again!

One evening as I was preparing dinner Olivia walked into the kitchen to talk to me had a seizure. A big one. A kind she never had before. A seizure unlike the others. She hadn’t had any problems for months. How is this possible? She’s been doing so good! We all thought she was on the road to recovery. We had let our guard down, we believed we were moving past this. Damn!

Soon Olivia was having daily seizures and wasn’t able to attend school again. After a few weeks she insisted on going back to class even if she was seizing. She was “comfortable” having seizures again and felt able to work through them at school if given the chance. To make her transition back to the class as easy as possible I went in and gave a mini seminar on Epilepsy and shared a bit about Olivia’s story. The children were very curious, asked a lot questions and seemed eager to see her again. By the end of the week I found a folder in Olivia’s backpack filled with letters from the students. They wrote beautiful letters reassuring Olivia that they would help her find a cure for Epilepsy and that they were her friends no matter what– strong words straight from the heart.

That folder of letters sparked an idea that has since mushroomed into an enormous undertaking for our family. I asked Olivia how she would have felt to read those types of letters when she first began having seizures. Her eyes lit up; an idea was born. Our family could write a book about Epilepsy and how it affects your life, but doesn’t have to dictate your life. Most of it would be from Olivia, but Natalie would write a chapter on sibling’s feelings and Bruce and I would address the parents. Look for the book “Making Lemonade” due out in 2010.

After a new series of MRI scans and tests the final report came in. The dark cloud that had been hovering above us for so long was now focused directly on Olivia, bearing down. Sadly we were told the grim diagnosis. The one that robs your child of her mind, then physical abilities, the one that destroys half of your child’s brain, essentially destroying who they are. Rasmussen Encephalitis. Very rare, very heartbreaking. A treatment? A cure? As rare and radical as the disease itself. A hemispherectomy to stop the destruction: fundamentally removing one-half of the child’s brain – one half!! In 2009 that’s the best we’ve got, it is unthinkable.

Amazingly, after a hemispherectomy the other side of a child’s brain will pick up most cognitive functions, memories, and personality, but will leave a tremendous physical deficit on the opposite side of the body. In Oliva’s case she would wake up talking, understanding, and cognitively functioning without constant debilitating seizures but in exchange she will have to give up physical movement of her entire left side. Eventually she will sit and stand on her own but forever have a significant weakness on her left side and forever lose the use of her hand, have limited vision, and walk with a limp.

As a mother 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 is all we have. It is hope. It is a future. I remind myself we have been given a choice that can save Olivia. We have 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.

When I began talking with Olivia about Rasmussen and the surgery obviously she had a lot questions and concerns. One of the first was “will I be able to play soccer afterward”? I reassured her she would and heard myself saying “but perhaps on a different league than before. Maybe a league for other kids who have faced some physical challenges might be a more competitive arena for you”. She retorted “So if there isn’t one, maybe you and Daddy and Natalie and I could start a league for kids with disabilities –that way we’d know I would make the team, because we’d be in charge of it”! That’s Olivia. That’s why I knew she will overcome the immense physical hurdles initially put upon her plate. And that’s why she’ll do it with a smile, with a whole lot of humor – and definitely some sassy talk!

Olivia With A Smile & A Thumbs Up...WOW!

By the time Olivia was heading into surgery she was having nearly 100 seizures a day! She couldn’t eat, sleep, or take a shower without collapsing to the ground. We knew it was time to move forward and give Olivia a chance at the kind of life she deserved, not the one she was living. And she was ready. As she was wheeled away from us in the pre-op room she gave us her signature “thumbs up” with a smile on her face. She was definitely ready!

April 20, 2009 – Olivia undergoes a right sided hemispherectomy at Miami Children’s Hospital.

Olivia At Rehab After Surgery

Olivia At Rehab After Surgery

Olivia woke up predictably paralyzed on her entire left side. She had no movement or feeling from her head to her toes or anything in between. She couldn’t hold her head up off the mattress or roll over – she was essentially a 10 year old baby. Over the next two weeks she progressed to sitting on her own and standing for seconds at a time. She was progressing; slowly, steadily. Two weeks after surgery Olivia was discharged to a rehabilitation unit at another well respected Miami hospital. She was the only pediatric patient; most were elderly who had suffered strokes, although there were a few patients under the age of 40 – but to her 35 was still elderly! Olivia referred to her rehab experience as bootcamp. Every day she was dressed and ready to start therapy by 8am and went most of the day with various therapists until 4 or 5 pm 5 days a week. Quite an exhausting schedule, but she was making daily progress now and that was a sweet reward. As she worked with her therapists she was learning independence and forging new pathways in the remaining hemisphere of her brain. The most beautiful part of all was watching her sleep every night without constant debilitating seizures; her brain was finally at peace.

3 ½ weeks after we entered the rehab hospital, Olivia said goodbye to her doctors, nurses and therapists and walked out very slowly with an arm crutch. What progress! Just 6 weeks after driving to Miami for an unthinkable surgery we were bringing our courageous daughter home. Life felt beautiful.

The adjustment to being home and still needing so much help was a bit difficult for everyone. Olivia continued daily therapy at an outpatient therapy center 5 days a week and began tutoring nearly every day, so she could catch up with her peers and begin school in August. It was the middle of June and we had a lot of ground to cover. As always we gave Olivia the chance of repeating a grade so she could regroup easier, and as always she vehemently refused and proceeded to achieve her goal by completing all necessary work. And in August – just 4 months after this life changing surgery Olivia proudly walked into our elementary school, into her proper grade – on her own, unassisted, ready to be a “regular kid”. She reconnected with friends, made new ones, and immediately rejoined the school show choir. Every day I waited outside school to pick her up and every day she limped out with her school bag, lunch box, and the most brilliant smile I’ve ever seen. Every day as I watch her I feel proud and blessed to be her mom.

December 2009: just 8 months after surgery

Olivia, now 11 . . . . has been able to “run” for 5 minutes during PE class, is still working very hard to improve her left sided paralysis, is determined to succeed at school, spends her time swimming, hanging out with friends, participating in show choir, and was the Grand Marshal of our Island Christmas Parade!!! Her schedule is like a rock-star: school, tutors, personal trainers, performances, friends. Throughout it all Olivia remains happy, hysterically funny, sassy, and very proud of how far she’s come. She continues to reach out to other kids who are facing surgery or who are still battling their illness. She has a long way to go, but is very focused on continuing to improve physically and academically. Her recovery will continue for many years.

As a parent this devastates you. You are never prepared for your healthy active child to be stricken with a life changing illness, radical surgery, or a lifelong disability. It is very heartbreaking and confusing. It can be difficult to see light through the darkness and find something good for yourself and your child. One way we have found peace and balance is to run half marathons – and I am definitely not a runner! Challenging ourselves physically helps us connect to the daily struggles Olivia must endure to simply walk. After what she’s been through, running 13.1 miles isn’t that long! We understand it is challenging to find hope. But hope is what life is about. Hope for strength, hope for potential, hope for peace, hope for joy and hope throughout the journey.

“Life does not begin with conception. It begins with hope.”
Stephanie Davis

And because of our hope for the future, very dear friends of ours helped us create a non-profit organization called the Olivia Davis Foundation which originally was designed to help us defray enormous rehabilitation bills that insurance does not cover. While we have utilized some of the money raised for equipment and therapy for Olivia, we see a broader picture. It remains our mission to make something positive out of this unthinkable situation. Therefore, we are devoting “extra energy” toward becoming a financial and inspirational resource for those affected by catastrophic Epilepsy and other chronic disorders. You can follow O’s progress, along with others on our website: www.OliviaDavisFoundation.org

 

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