At 17 years old, Rafael's mother Pilar took a leap of faith and moved from Spain, to the land of opportunity. Quickly, her brillance, kindhearted soul, and determination led her into the ranks of success. Little did she know that she would become a highly successful researcher and talented grant writer at Washington University. Pilar is arguably the epitome of the American dream. She rose up from poverty, made something of herself, was gracious, humble, and giving all the while bettering the lives of those her surrounded her.
In October 2011, Pilar was diagnoised with Early Onset Alzheimers Disease. It was a shock and it was hard to comprehend the profound impact this diagnosis would truly have.
Her life as she knew it came to a halt. The neurologist gave her the grim news that she had about 5-6 years to live. She and her husband soon retired from their dream jobs and began to travel and make the best of the life she had left to live.
After a few years of traveling she and her husband made the difficult decision to move back to Spain where she would be close to her siblings and have the benefit of free health care. While a tough decision, it was one made in her best interest. Every decision her husband has made reguarding her care has been in her best interest and is why I believe she has spent much of these past 6 years grinning from ear to ear.
As often as Rafael (and myself) could, we would make visits to Spain. Though the disease continued to progress, Pilar maintained high spirits. She could be seen dancing, singing, and smiling most moments of the day. Even as everything she knew was slowly being taking away from her, she continued to make a positive impact on the lives around her.
In the beginning of 2016, Rafael and I had the pleasure of spending the first few months of the year with Pilar in Spain. We shared lots of laughs, but we were also met with the ugly reality of the disease. Even as extremely part time caregivers, we saw firsthand how ugly Alzheimers really is. It does not discriminate.
In those few months, we noticed a significant decline in her mental capacities.
In May of 2016, the difficult decision was made to enter Pilar in a residental facility that would be able to deliver to best care for her needs. In the past year, it seems that the deterioration of Pilar is becoming increasingly more rapid. So much so that just last week, Pilar was admitted to the hospital for some complications.
A neurologist met with Pilar. The news delivered is what we have anticipated all along, but were never really ready to hear. The sand in her hour glass is running low and she has about 6-8 months left to live.
In these months, changes will seem as if they happen more and more quickly as the brain begins to lose the ability to regulate the body even in the most basic of ways.
With that, Rafael and I have got to make it there. Since we have students who depend on us by day, bills to pay, and are both in school ourselves, we are hoping we can push the visit off until May. Unfortunately, time is fleeting us...faster than ever.
With his father fronting the cost to have Pilar in a private facility along with the cost of living he is only able to help us afford the cost of a single ticket to Spain.
While we never wanted to be in a situation where we find ourselves seeking handouts, here we are. Understandably, we have rent, utilities, and other bills to pay and with working in education the money to afford a ticket costing $1,200-$1,800 just isn't there.
So here's the part where we both ask that if you can find it in your heart and your wallet to please consider helping us out.
I will provide updates as often as I can, thank you for your love and support.
- Jazmyn Burnitt-Erp
- Kelly Markway
- Laura Wiltshire
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