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Spencer’s Story

Welcome to our CaringBridge website. We've created it to keep friends and family updated on Spencer's progress as he recovers from a snowboarding accident that left him paralyzed at age thirteen.  Visit often to read the latest journal entries and write us a message in our guestbook.

Spencer had a serious snowboarding accident at Brighton, Utah on Monday, February 1, 2010. He suffered a severe spinal cord injury. He broke both his C4 and C5 vertebrae.  Spencer was airlifted off of the mountain to Primary Children's Hospital in Salt Lake City, Utah. At the hospital, Spencer was intubated and put on a ventilator because he was unable to breathe on his own. Spencer could not feel the needles doctors poked him with to check for sensation. He was paralyzed and could move only his left forearm voluntarily. Doctors gave a grim prognosis; Spencer may never breathe on his own, and would likely never recover sensation or movement. 

Spencer was wearing a helmet at the time of the accident which likely saved him from brain injury or worse. The accident occurred on a bright sunny day on a "cat track" used between runs and not on a steep or difficult run. A trick of light concealed a bump and by the time Spencer saw the bump it was too late to stop and he caught an edge of the board and was catapulted head first into a rock-hard snowbank.  We have been overwhelmed at the generosity, love and support we have received from friends, family and strangers. 

Years later, Spencer is proving doctors wrong and making a stupendous recovery. He has sensation and movement in almost every part of his body, he can write with his left hand, push his own wheelchair, stand and take unassisted steps. He works harder than most athletes to recover what many people take for granted: mobility and independence. He is now going to college at USC on a Swim With Mike scholarship and studying chemical engineering, a dream come true. 

Spencer's progress is a direct result of the four physical therapy sessions and one hand therapy session per week he had for the first four years after the accident. At college, his therapy has been reduced to two long sessions per week. These therapies are vital for Spencer to make neurological connections and continued progress towards independent living.  

Expenses for rehabilitation, hand therapy, and medical equipment are not covered by insurance and exceed $20,000 a year.  Spencer raises funds from the community through HelpHOPELive, in part because HelpHOPELive provides both tax-deductibility and fiscal accountability to contributors. Contributors can be sure that funds contributed will be used only to pay or reimburse medically-related expenses. To make a contribution to Spencer's fundraising campaign:

Make checks payable to:
HelpHOPELive

Note in memo section:In Honor of Spencer Fox

Mail to:HelpHOPELiveTwo Radnor Corporate Center100 Matsonford Road, Suite 100Radnor, PA 19087

For secure credit card donations: Call 800-642-8399 or go to HelpHOPELive.org, enter Patient Name Spencer Fox, and click the "DONATE NOW" button.

For more information, please contact HelpHOPELive at 800-642-8399.

Thanks for your support!


Latest Journal Update

Five Years: Watch and Wait

I want today to be just like any other, but it's not. 

Today is February 1. Five years ago today my son Spencer broke his neck and was diagnosed quadriplegic.  He was only thirteen years old, my baby, my child. The split-second, life-changing shock was followed by months of hospitalization, a home remodel, reconstructed lives, years of fundraising, endless rehabilitation, ambitious goals for independence, financial obstacles, dedicated effort, isolation, and study. Though our journey was marked by detours and pitfalls, we grew stronger with each challenge we conquered. We made new friends and learned deep gratitude for each day. And astonishingly--luckily--Spencer's story has largely been one of triumph.

Five years later, this is our new "normal life." Now it is watch and wait. 

I watch Spencer and marvel. In five years he worked his way from a totally dependent, physically compromised and overwhelmed teen to a capable and confident young man creating great opportunities for himself. He graduated high school last spring with a 4.3 GPA. He is attending college, living virtually independently in a dorm room at USC while studying chemical engineering. He is able to navigate the campus in his wheelchair and walk short distances in his dorm. He made the Dean's List his first semester. He went skydiving during Christmas break. No matter the degree of his disability, Spencer focuses on his abilities and he is unstoppable. Who would have guessed five years ago, when even breathing required a machine, that Spencer would be where he is today? Every day is a wonder and if people learn anything from Spencer's story it should be to never, never give up. 

I also watch all of the research related to spinal cord injury and paralysis: PTEN, Schwann cell patches, axon growth, clinical trials, stem cell transplants, neuroplasticity stimulants, muscle spindle feedback loops, intracellular sigma peptide injections, and more. And behold the rising tide of life enhancing gadgetry including exoskeletons, mind controlled bionics, and exciting neural implants. Blessedly, there is funding going into so many research areas resulting in promising knowledge. But alas, so far there is nothing to help. Nothing at all.

I wait for something that might end the suffering, not just for my son, but for so many others. Paralysis from accident and disease will impact 1 in 50 Americans sometime during their lives. There are 5.5 million Americans living with paralysis, including 644,000 children and adults in California. Paralysis is devastating to individuals and families. Complications from bowel, bladder, pressure sores, and neuropathic pain can leave people living in misery. Autonomic dysreflexia and infection present a constant threat. Paralysis is every single day, resulting in lifetime care costs as high as $3-5 million for a high level cervical injury and cost burdens are most often shifted to the government. SCI does not discriminate among young and old, rich and poor. We need cures.

Mostly, my mother's heart waits for a breakthrough. Spencer has so much, but I am greedy and I want more. I wait and I watch and I hope for something--anything--that will help my son live without physical restraint. I want for him to be pain free, with a full range of motion, cat-like reflexes, an athlete's balance and two good strong hands. Sometimes, at night, I have vivid dreams featuring Spencer sprinting, lunging and laughing carefree; he seems much younger in my dreams. I wait for my dreams to come true. We are closer than ever before.

Five years and I will never give up hope for a cure. Never.


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Comments

5 Comments

Sybyl Wilson Ferrari
By Sybyl Wilson Ferrari
Celia, "Greed is good" as Gordon Gekko said, and it could not be truer when it comes to what you want for Spencer. Spencer could not have done it without you, and you could not have done it without his strength and determination - what a magnificent team.
Congratulations Spencer on all you have accomplished, and cheers to all you will accomplish in the future.
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Vana Puckett
By Vana Puckett
Amazing! My hat is off to you Celia, as a warrior mom! Spencer keep going, you are amazing!
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Elizabeth Davis
By Elizabeth Davis
You two have handled this like no others. Remarkable. Awesome.
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Katrina Goldsmith
By katrina
Beautifully said, Celia. Sounds like a NY Times op-ed...hint hint!!!

It's a wonderful story, but you're right to be greedy. Who wouldn't be? Your "greed" has reaped so much already. And you've carved a path that others can follow and benefit from. Keep dreaming!

xoxoxo
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Chelsea McGraw
By Chelsea McGraw
Spencer is The Miracle. His character and and his nature took every resource available, gave every ounce of his determination and yours, then turned catastrophe into destiny. At this profound moment all I can do is applaud and express deepest gratitude to every force brought bear in the creation of Spencer's new life, For each person who faces their own "trial-by-fire" Spencer leads a way. Humble and inspiring, he wins for everyone of us. Spence, you, your mom, and your whole family turned our community into a larger family. Now you are preparing your mind, with the same rigor that you vanquished the dreary prognostications. No one knows what you will accomplish but I know it will be AMAZING!
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