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Szilvia Izabella's Fundraiser:

Szil's Freezin' For A Reason

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Szilvia's Photo
Szilvia's Photo

BENEFITING:

EVENT DATE: Feb 15, 2014

Szilvia Izabella

THE STORY:

The Goodyear Lake Polar Bear Jump is a fundraising event to help children, individuals and organizations in need. The event, which takes place in February , on Goodyear Lake, outside of Portlandville, NY, dares you to join the jump club or even come watch the fun.

http://www.pbjump.com/index.html

Below are this years recipients:

Devin James Carey

Devin James Carey was born on April 22nd, 2013 and is 8 months old. From the day he was born he has always been a happy, smiling little boy. He loves to watch the fish tank his mom and dad have and he loves to play with his toy elephant from his Grandma.
 

On December 8th Devin was diagnosed with ALL MLL-R Leukemia. Devin appeared to be a happy healthy baby until the middle of November 2013 when he first became sick with an ear infection, a week later his doctor thought he had pneumonia, but when he didn't get better and began to cry non-stop he was rushed to Upstate Medical in Syracuse where they diagnosed the Leukemia. He is now  at the Golisano Childrens Hospital in Syracuse NY. The same day he was diagnosed he was given blood and platelets to reduce his white cell count and then underwent surgery to put a Hickman Catheter in his chest for his Chemotherapy. A week later they needed to do that surgery again as Devin, being a curious little guy, pulled on the catheter and it had to be repaired. After the surgery, in which he lost a large amount of his blood he was very sick with a fever and was in pain and had to have another blood transfusion. For the next 2 years he will undergo chemotherapy and a variety of drugs to try to kill the cancer cells in his blood. The first month of treatment is the most critical as he as at high risk for infection and although Devin is considered intermediate risk because of his age he still has a very severe form of Leukemia for infants. 

His Chemotherapy will occur in five blocks within the first year. He is nearly done with the first block, which is the induction block. Next is the intensification block. These two blocks of treatment will tell us how he his body responds to the treatment. He will then get three more blocks of chemo and the hope is that he will go into remission at that time. The ALL MLL-R Leukemia is very resistant to treatment. 

For updates about Devin visit the Devin James Carey Facebook Page:
https://www.facebook.com/devinfeliciajames

Dax Coe

Dax Coe is a 4 year old boy from Fairfield NY that was diagnosed at birth with a heart murmur.  He has been visiting his cardiologist, Dr Smith in Syracuse, since then for regular follow ups.  On September 17, 2013 we went to what we thought was a routine follow up and that is when they found a hole in Dax’s septal wall and also discovered that Dax would need reconstructive surgery to move a vein from one side of his heart to the other.  Dax had his surgery on Tuesday December 3, 2013 and was in the hospital for 6 days.  The surgery went well and Dax is on the road to recovery but we have been told by doctors that Dax will most likely need a pace maker in a few years as his heart rate is lower than what it should be.  We continue to follow up with his cardiologist to monitor his recovery and heart rate.

Isabelle "Tinker" Ewing

Isabelle is a beautiful 10 year old little girl.  Tinker was just a average little girl that could put a smile on anyone's face.  She was a very active girl; she loved the outdoors, swimming, running, and riding horses. She also loves crafts and sewing.  On May 18th, 2013, Tinker had a AVM rupture in her brain.  Her first surgery stopped the bleed but they could not remove the AVM. She has had multiple Angiograms, MRI's and Cat-scans. They put a shunt in to help the drainage. They found that the AVM was imbedded in her brain stem.   Our only option was Radio Surgery, she had that done on October 17th.  It will take 2-3 years for the radiation to collapse the AVM on in its self.  It was in the vomiting central of her brain. Because of the rupture Tinker vomits at unpredictable times almost every day. Some weeks are better than others. The rupture also damaged her motor skills, voice and swallowing. She is learning to walk all over again. All of what she lost she is still fighting to regain. Tinker says she will never give up until she reaches the top!

Carter Hilton

Carter was born a fighter and after a very rough and very complicated pregnancy this little miracle boy was born at just 32 weeks gestation. After a lengthy stay in NICU with many interventions he was finally able to come home to join his family. Carter was born with severe bilateral congential talipies (club feet) for which he has already undergone 5 surgeries; the most recent of which has left him dependent on his wheel chair for several months while he heals. His feet require several visits a month to a specialist in Syracuse. He requires braces both during the day and the night to keep his tendons from tightening which causes him significant amounts of pain while walking. Carter also suffers from asthma and a heart murmmer. Despite his struggles in life Carter maintains his great outlook on life and always has a heart melting smile to charm you with. He is an amazingly strong little boy with big possibilities.

Myles Magnan

Myles means soldier. This meaning is very appropriate for him as he has already had to face many battles at such a young age. Early on during the pregnancy it was discovered that Myles had hydrocephalus. This means that the fluid in his brain was not draining as it should. As a result of this build up, the anatomy of Myles brain was altered. In addition to this Myles was also diagnosed with a partial deletion of chromosome six. Doctors gave a wide spectrum of how this could affect Myles, and the possibilities were quite scary.

Myles has battled through surgeries, seizures, extended hospital stays and everyday struggles with mobility and communication. He works hard daily with his family and therapists to gain the skills he needs for daily life.

Myles is a loving and joyful three year old. His greatest attribute is his affection he has for people. He knows when someone is having a rough day, and needs a hug. “Myles was sent here to soften hearts” is how his Great Grandfather Martin puts it. His sweet soul is one that brings such comfort to those he encounters.

There are days that are harder than others, but Myles indeed is a soldier. He pushes through hardships and continues to amaze his doctors, therapists, family and friends with the progress he has made. He is such a blessing.

“I can do all things through Christ who strengthens me” Philippians 4:13

Charles "Charlie" Oakley

Charlie and his twin sister were born on January 5, 2009, seven weeks early.  They spent a total of 16 days in the NICU at Albany Medical Center. At 6 months, Charlie was diagnosed with right hemi-plegic cerebral palsy and autism.  After the diagnosis, he started on an aggressive regimen of physical, occupational and speech therapies.Charlie can walk with the assistance/use of his AFO’s (ankle-foot orthotics) a walker and on occasion his wheelchair.

At the age of 3 he started attending Carousel Children’s Services. What an amazing group of people.  He has done nothing but flourish.  He’s met and surpassed many of the goals that have been set for him.

Anyone who meets Charlie instantly falls in love.  He has the ability to wrap you right around his finger.  He’s an amazing little man.   I’ve seen more persistence and determination from him than some adults. As a result of his hard work, he has learned to feed himself and even ride a tricycle.

With any luck, Charlie will live a full and independent life.  He’s definitely one of his mother’s heroes.

Logan Piefer

Meet Logan.  Logan is the happiest 10 year old boy that you could ever meet.  He smiles at everyone and loves holding hands.  Logan loves to spend time with his family and watch his favorite TV shows.  He enjoys going to school, the park, and anywhere else that he can interact with people.  

When Logan was 15 months old, he was diagnosed with MPS II (Hunter Syndrome).  Hunter Syndrome is a progressive and terminal genetic disease that attacks the entire body.  Although Logan learned to walk, talk, and play just like any other child, over the years we have watched him lose the skills he once had.  By the age of 4, he could no longer talk and he had forgotten how to play with most toys.  At 6, it became difficult for him to eat, and he had to have a feeding tube placed.  At 10, he is losing the ability to walk and can only walk short distances unsupported.  Soon he will be fully dependent on his wheelchair. 

In addition to the loss of developmental milestones, Logan has had a complicated medical history.  He has had 18 surgeries and procedures under general anesthesia and sees 12 specialists, mostly in Albany.  The amount of medical equipment in our home keeps increasing.  He has been in the hospital so many times that we’ve lost count.  He spends 5 hours each week getting an infusion of the enzyme he is missing in order to slow the progression of the disease.  In spite of all of this, he keeps on smiling.

Amy Crowningshield

I am a mom of two awesome boys, Nicholas (13) and Steven (12). I have a devoted husband, Kurt, and a beautiful stepdaughter Ava (7). It is because they need me that I am still here today.

For most of my life, I have been fighting autoimmune disease, beginning at age 19. Fast forward through mysterious suffering, 200 doctors, and an MS diagnosis in 2003, my disease progressed in unprecedented ways. I was a mystery and a guinea pig and a frustration to my doctors, even at the Mayo Clinic.

Eventually in 2010, my neurologist tested me for a very rare disease, and results confirmed I had a very advanced & progressing case of SPS, Stiff Person Syndrome. The name is almost funny, but the illness certainly isn't. My own body is destroying my muscle nerve receptors, causing my muscle tissue to spasm and never release. This has and will continue until I cannot move, and muscles begin to pull other muscles. They can also rupture and break bones. The disease was beginning to migrate into my muscles as well. Every morning, I woke up frozen in agony, and it would take me an hour to move my muscles one by one so I could get out of bed.

I have at times been wheelchair bound and have always suffered in intense, Charlie-horse like pain --for YEARS without one minute of reprieve. Life got very grim for me during those years.

In 2012, along with a candy store of pharmaceuticals, a new treatment became available to me called IVig. It was part blood transfusion, part chemo, part plasma replacement-- in short, it filled my body with donated antibodies to fight my own killer antibodies to stop the SPS progression.

In order to afford these weekly treatments at $10,000 per session, I had to immediately pay my full insurance deductible and total out-of-pocket max to get my FIRST treatment. $5,000 by Jan 1, 2013.  I was ready to give up. I can't work, I had no money, and it all seemed hopeless.

Two beautiful things happened. First, Jennifer Griffiths threw two fund raisers, one by herself and one with the help of MCS students, to raise money for my outstanding medical bills. Second, my sister Carmen Gutierrez orchestrated a viral internet fundraiser that, thanks to family, friends, Milford people, and complete strangers across the country raised the $5,000 my insurance required in just 24 hours!!!

I have received treatments for all of 2013, and thank God, my disease has gone into remission. There is no cure for SPS, so I am at the mercy of the remission with maintenance IVig treatments (now monthly). I still cannot work, which eats at me, but I am happy to know my organs and muscles are safe for now from further damage.

With the new year comes a new deductible...and at the moment, Obamacare has left me without insurance. I will remedy this, but I am feeling more blessed than ever that the Portlandville United Methodist Church chose me to be one of their recipients of funds raised from the Polar Bear Jump. Once again, community and friendship will come to my rescue and help me to get strong for my two boys who need me.

Love to all, and HAPPY NEW YEAR, 
Amy

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