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Carmela Komisarz's Fundraiser:

Siblings have brain surgery on same day. Money raised goes towards medical bills

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Carmela Komisarz

THE STORY:

A very good friend of mine, Kimberly VanBaak has faced more rough times then many of us could possibly imagine. I have tried to be there for her in every way that I can. I have been the best friend I can be to her. But, when her medical bills start coming in, I don't know how much more I can do.
Please read her families story:
(I did copy it from https://www.conquerchiari.org/pediatric/pediatric-index.html )

If you suspect that your child has Chiari or have been recently diagnosed, these pages may be useful in helping you understand the condition. Click on "Browse Pediatric" in the navigation bar to find patient literature to help you explain to family, friends, medical professionals and teachers that may have a part in the care of your child. You can also meet "real" pediatric patients, get connected to other parents on Facebook and find some hope from other children who battle Chiari everyday.

Excerpted from the personal struggles sent to us from Chiari patient Kimberly VanBaak and her 3 children. Please click on the link to the full story in pdf, to see this families battle.

January 4, 2012 was the day Chiari would be brought into our lives, the day of our son’s first MRI. Little did we know, that this was the start of a long journey to discovering four members of our family have been living with Chiari Malformation.

Parker age 5, Gracie Claire age 6, Zoey age 7 and I (mom) ALL have Chiari.

All three of our children have been constantly plagued with sickness: stomach flu that lasts longer than most, ear infections, bronchitis, pneumonia, croup, allergies, asthma, hives, sinus infections, reflux, tummy aches, dizziness, hypotonia, delayed milestones, clumsiness, frequent falls, numbness, crawling feeling on legs, leg pain, migraines, multiple doctors/specialist appointments and frequent hospital stays due to this medical condition.

Parker was diagnosed with a 16mm Chiari Malformation. A wave of fear tugged at my heart and I kept asking “a what...what does he have?” I quickly scrambled down this unheard of and bizarre word the woman on the phone kept repeating. They put me through to the neurosurgeon’s office & the appointment was set for a few days later. I was filled with concern and fear of the unknown new diagnosis which brought about days and nights of researching this serious neurological condition.

After the initial consultation, the neurosurgeon requested another MRI of his spine to determine if Parker had a syrinx, thankfully, he did not. Chiari decompression surgery was set for two weeks later. Surgery was seven hours long. He had an allergic reaction to morphine and threw up for two days until I finally pushed to give him something else for pain. His recovery was long. By the end of April we saw a new boy and significant results.

Zoey was diagnosed with a 5mm Chiari Malformation, just months after her brother’s decompression surgery. The neurosurgeon dismissed the Chiari as the culprit of her leg pain that was intensifying every day. Her leg pain seemed to increase as she progressed throughout the day. By mid day, she would set herself up in the family room with all of her things around her so she did not have to get up and walk about. It was extremely hard to sit by and watch your baby in pain day in and day out.

We attended the Conquer Chiari walk. Dr. Gilmer gave a speech that moved me. I knew that our children needed to be seen by her. I tried to make an appointment after the walk but it was an insurance debacle. I did not give up though as I knew if there is a will there is a way! Dr. Gilmer’s coordinator attended one of our local Chiari Support Groups in March to offer information on Chiari and the NEW Chiari Clinic. I asked many questions about my childrens symptoms. I decided to private message the coordinator hoping she would forward my children’s symptoms onto Dr. Gilmer.

Parker & Zoey met Dr. Gilmer within seven days of the message. She found that Zoey had a 9mm herniation, not a 5mm herniation per former evaluation, very little if any cerebral fluid flow and that she presents as if she has a brain tumor, as well as scoliosis due to Chiari being untreated for so long. She also confirmed that Parker did not have adequate cerebral fluid flow, due to scar tissue from his first surgery, and that his right bone appears to have grown back from his decompression done just one year ago. Both, children were scheduled for surgery April 5, 2013. The appointment was bitter sweet.

The surgeries went smoothly and the support our family received from the local Chiari Support Group in addition to, Bronx the therapy dog was amazing. At one point I looked at my hubby and said could you imagine having to go through this again in a few weeks with the other child? We both agreed that we made a good choice to have their surgeries on the same day.

Gracie Claire, began to have headaches which prompted a visit to the neurologist who prescribed migraine medications in addition to an MRI to rule out Chiari. She suffers from severe separation and general anxiety and just recently told me that the bottom of her feet tingle and she feels bugs crawling on her legs. During Parker and Zoey’s three week post-op visit, I brought along Gracie Claire’s scans for Dr. Gilmer to take a look at. My thoughts were correct, but based upon her mild symptoms we are taking the wait and see approach as we have been through this surgery three times and would never want to put one of our babies through it unless it was deemed absolutely necessary.

7 weeks post-op, Parker still has headaches and Zoey’s legs still hurt, but both of their pain levels are much milder than prior to surgery. We have seen improvements with their symptoms and know that we will continue to as they are still amidst the healing process. Our children are, and continue to be, our inspiration as they truly are superhero’s! We remain positive that our children will continue to excel in all areas of life with hopes to live life on a daily basis pain free. We know surgery is not a cure as currently there is not a cure for Chiari rather, we embrace the good days or moments with vast gratefulness, and enjoy them to full capacity. On the bad days, we find comfort in knowing the good days are just around the corner.

We know that we are not alone in our journey as there are many families out there conquering chiari too and find comfort in their support & encouragement. Our positive attitude and outlook on life in addition to our faith carry us through our family’s journey of ups and downs with our heads held high! We have a new mission and voice of spreading Chiari Malformation awareness in conjunction with our amazing Chiari support group family!

I recently was diagnosed with Chiari Malformation and will be undergoing decompression surgery this month (June 2013).


For news stories on the VanBaak family or to read the full version of their personal struggles see the links in the right side bar!

Please see the conquerchiari.org/pediatric page.

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