Berlynn is a beautiful 2.5 year old girl that is sassy, strong, and courageous; and has been through more than her daddy and I combined and yet still has a beautiful smile on her face.
Berlynn was diagnosed in April 2017 with a rare brain disorder called Arnold Chiari Malformation Type 1, and Specific Antibody Immune Defenciancy. Chiari is a serious Neurological disorder where the bottom part of the brain herniates downward out of the base of the skull . This causes the spinal cord to be crowded which puts pressure on the brain and spine and causes many disabling symptoms.
Specific Antibody Immune Deficency is where her body makes antibodies however she does not keep them. Therefore she can not fight off the common colds or bacterias like most people. She currently is growing bacterias that are resistant to all antibiotics but one which is not safe for long term use. She will now be starting IVIG infusions to help kickstart her immune system. Also to help keep infections at bay while awaiting for her decompression surgery.
Berlynn currently has had 2 sedated MRI's, 3 surgeries and is awaiting her first Brain surgery for Decompression. She has over 20 diagnosis, and is currently on a ventilator set up as a bipap while sleeping with oxygen. She has a pulse oximeter while sleeping as well to alarm us when her heart rate or oxygen drop to low. But Berlynn does not let any of this stop her. She is a fighter, my Hero and daily inspiration.
Due to Berlynns unique and complex case she has doctors from around the coast; ranging from Sacred Heart Children's, Seattle Children's, and Stanford Childrens Hospitals and the cost is unimaginable.
We are praying to raise money and awareness for Berlynns Journey and to hopefully help at least one person down the road; get the help they need by learning about her Journey.
The money raised will be split in half.
Half the money will go towards our family to help with upcoming expenses due to her Brain surgery and both of us taking time away from work to be with her for an extended period of time. The travel expenses, food, hotels, and childcare for our other three kids while away. The other half of the money will go into an account to start a foundation in spokane to raise awareness for the "Conquer Chiari walk foundation" to raise awareness locally.
Please like and share with as many people as you can. Thank you and have a blessed day. # BerlynnStrong #conquerchiari #chiariStrong #zipperhead
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