The day after Kinsleys very first christmas, at only three weeks old, She displayed discomfort and had an abnormal breathing pattern. She was immediately sent to the hospital and diagnosed with possible croup, and was expected to be fine. That night, she began to crater- She started to run extreme fevers, was in respiratory distress needing oxygen, lethargic, pale, her eyes were dilated, and she moaned in severe pain. After testing and a lumbar puncture, she was diagnosed with sepsis and bacterial meningitis, and transferred two hours from home via helicopter to San Antonio Children's hospital, where she spent the next two months fighting for her life to stay alive.
Future MRI scans revealed she had acquired hydrocephalus (water on the brain), a massive stroke over the entire right half of her brain, and she needed to have her very first brain surgery. On February 3, 2017 She had a VP shunt placed, and was discharged from the hospital three days after surgery.
In May of 2017 Kinsley began having very severe seizures called infantile spasms. Infantile spasms are a catastrophic form of infancy epilepsy. They create a severe brain wave called hypsarrythmia and the prognosis for children with infantile spasms is typically very poor. Most children will have some form of retardation, and many children do not gain control of these seizures within ideal timing.
She failed several AEDs, and three rounds of heavy hormonal steroids. The cost of these medications is so outrageous, ONE round of the steroids cost $150,000 for a three week supply, and another medication she’s taken for for a year cost $4,765 for a 30 day supply... insurance does not cover the full price of these medications, And none of that cost is including therapies, hospital stays, or any equipment Kinsley needs.
During kinsey's fight against infantile spasms, she had a lot of health dips that put her into respiratory distress multiple times, and she landed herself in the ICU on average of every three weeks. The hospital knew her by name, and gave us our favorite room, thats how often we have been there.
Kinsleys very developmentally delayed, and she has many after effects from bacterial meningitis such as:
Epilepsy, infantile spasms, cerebral palsy, cortical blindness (She is legally blind), unilaterally deaf, sensory processing disorder, hydrocephalus, bi-lateral third nerve palsies, global developmental delay... and there's probably more that I can't even think of right now. She is two years old now and when most children are usually walking and talking, she still can't fully sit up on her own, but we have faith it will come in her future.
On July 25, 2018, Kinsley underwent her second brain surgery. A right hemispherectomy. This surgery is so radical, and it’s only done on a handful of children every year in the united states. The odds of her being a surgical candidate were very slim to none. By having this surgery, she had a chance at living seizure and medication free, a chance to walk, and gain cognitive abilities that seizures prevented her from having... But it doesn't come without hard work or expenses.
This account is set up to help our family cover costs for therapies, medications, equipment, orthotics, EEG testing, MRI imaging, emergency visits, hospital stays, deductible costs, testing, and anything else Kinsley may need through out her lifetime.
This small story isn't enough to tell you all the things our daughter has had to endure or conquer. Her story is not anywhere near over, and we will continue to fight and work our way through anything that comes our way. We spend 11 hours every week in therapy, soon to add hippo and hydro therapies. We also work with her for hours at home. We truly give this little girl our all.
If you do find it in your heart to donate towards her medical account, or even share this fundraiser, please know we thank you.
To get to know Kinsley better, please click the link below.
Click here to follow Kinsleys Meningitis Journey
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