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Miss Ava, now 8 years old (turns 9 Jan. 8th), has defied the odds. In February 2013, at 3 years old, Ava was diagnosed by MRI with a DIPG (Diffused Intrinsic Pontine Glioma) a rare form of brain cancer. DIPG is usually terminal within eighteen months of diagnosis and the treatment options have not changed in 40 years. We were given the option of “watchful waiting” by Ava’s medical team at the time and have continued that choice since diagnosis. We embraced alternative medicine, diet changes and natural therapies to give a holistic approach to treatment and better her quality of life. We have been very blessed with amazing, helpful and giving individuals and families, who have guided us along this difficult journey. Without the help of those individuals and families we wouldn’t be where we are today. Ava’s MRI’s have been stable with signs of improvement in the tumor. She has done so well, that, as of May 2018 her medical team changed the DIPG diagnosis and are now say the tumor is a low-grade pontine glioma.
Right before Ava was diagnosed in 2013, her doctor suggested she had Cerebral Palsy. So, we had an MRI, which is when they found the tumor. The medical team hasn’t taken the Cerebral Palsy diagnosis away, as Ava shows many signs and symptoms of CP. Ava also struggles with learning disabilities, cognitive delays, speech difficulties and fine and gross motor delays. She’s had quite a few tough cards dealt in her 8 short years of life. Those delays cause a great deal of daily living stress for Ava. She’s often the last kid to complete a gross/fine motor skill at school activities. Although she’s made great improvements in her abilities, life is still hard and kids can be mean.
In 2017, we found a Neurological Chiropractor locally and began treatment for her neurological defects within his office. We have seen great strides and improvement in her daily living. When her Neurological Chiropractor suggested we seek treatment at Plasticity Brain Centers of Orlando, we were 110% on board. The biggest hurdle is the cost for treatment. Insurance will not cover any of the treatment costs. The cost for Ava to receive one week of extremely intensive brain treatment will be around $10,000. Knowing that this treatment could make Ava’s daily living even one step better is worth it in our eyes.
While at Plasticity Brain Center (www.plasticitybraincenters.com), Ava will undergo five full intense days of functional neurology and brain “re-training”. They will work on her balance, speech delays, cognitive delays, gross and fine motor skills, eye tracking, cerebral palsy symptoms, learning disabilities and the main goal will be to try to get the brain “wiring” re-done so her brain can communicate correctly with her body. Some of the technology and techniques are way over my head and I can’t explain them well enough! The brain center custom tailors each patients treatment to what they need and can handle. This clinic is known worldwide and has some of the best of the best of functional neurology doctors on staff. Ava and her mom (Samantha) will be participating in treatment the week starting February 3, 2019.
Supporting Ava on this step in her journey will mean the world to us. She is looking forward to being able to keep up with her friends at school and in her words, “I don’t want to always be the last kid”. She wants to be as normal as she can and not have her disabilities get in her way. She’s a stubborn girl, with a will-power like “Wonder Woman”, she finds ways to make do, but this may make things just one step easier for Ava. We thank you for your support and willingness to help Ava’s life be better!
If you would rather help by sending a donation to her local benefit account that may be done also and would avoid the fees with this GoFundMe account. She still has her benefit account at the Community Bank, Ava Johnson Benefit, PO Box 315, Avon, SD 57315. Please contact us with any questions or concerns.
Many Thanks and Love,
Ava, Samantha, Mark & Family
www.plasticitybraincenters.com
Photo credit: Leah Insko Photography
Right before Ava was diagnosed in 2013, her doctor suggested she had Cerebral Palsy. So, we had an MRI, which is when they found the tumor. The medical team hasn’t taken the Cerebral Palsy diagnosis away, as Ava shows many signs and symptoms of CP. Ava also struggles with learning disabilities, cognitive delays, speech difficulties and fine and gross motor delays. She’s had quite a few tough cards dealt in her 8 short years of life. Those delays cause a great deal of daily living stress for Ava. She’s often the last kid to complete a gross/fine motor skill at school activities. Although she’s made great improvements in her abilities, life is still hard and kids can be mean.
In 2017, we found a Neurological Chiropractor locally and began treatment for her neurological defects within his office. We have seen great strides and improvement in her daily living. When her Neurological Chiropractor suggested we seek treatment at Plasticity Brain Centers of Orlando, we were 110% on board. The biggest hurdle is the cost for treatment. Insurance will not cover any of the treatment costs. The cost for Ava to receive one week of extremely intensive brain treatment will be around $10,000. Knowing that this treatment could make Ava’s daily living even one step better is worth it in our eyes.
While at Plasticity Brain Center (www.plasticitybraincenters.com), Ava will undergo five full intense days of functional neurology and brain “re-training”. They will work on her balance, speech delays, cognitive delays, gross and fine motor skills, eye tracking, cerebral palsy symptoms, learning disabilities and the main goal will be to try to get the brain “wiring” re-done so her brain can communicate correctly with her body. Some of the technology and techniques are way over my head and I can’t explain them well enough! The brain center custom tailors each patients treatment to what they need and can handle. This clinic is known worldwide and has some of the best of the best of functional neurology doctors on staff. Ava and her mom (Samantha) will be participating in treatment the week starting February 3, 2019.
Supporting Ava on this step in her journey will mean the world to us. She is looking forward to being able to keep up with her friends at school and in her words, “I don’t want to always be the last kid”. She wants to be as normal as she can and not have her disabilities get in her way. She’s a stubborn girl, with a will-power like “Wonder Woman”, she finds ways to make do, but this may make things just one step easier for Ava. We thank you for your support and willingness to help Ava’s life be better!
If you would rather help by sending a donation to her local benefit account that may be done also and would avoid the fees with this GoFundMe account. She still has her benefit account at the Community Bank, Ava Johnson Benefit, PO Box 315, Avon, SD 57315. Please contact us with any questions or concerns.
Many Thanks and Love,
Ava, Samantha, Mark & Family
www.plasticitybraincenters.com
Photo credit: Leah Insko Photography