THE BIRTHDAY CURE: A SPOTLIGHT ARTICLE
CURE is on a mission to heal the world but is determined not to lose sight of the individual. Sometimes the overwhelming number of statistics that are presented each day — particularly in the wake of the Covid-19 Pandemic — can cause desensitization, leaving people unable to comprehend the true impact of disease and genetic illnesses. That is why each week the project creates dedicated Spotlight articles, with the sole purpose of highlight those living up-close and personal with these conditions — be it via the research institutions who work tirelessly to find effective treatments and cures, or the sufferers of the various ailments, where each day is a battle. Cure began its life as a charity dedicated to the eradication of childhood cancers. While that is still the case, the project has grown so much wider in scope faster than could ever have been anticipated, and now also seeks to help others who are in different, but equally challenging circumstances. That is why Ayleen Vera, the brave subject of today’s Spotlight article is someone suffering from something entirely different, but one that CURE was still able to give help to.
Sixteen-year-old Ayleen is the first-born daughter of Geovani Vera and Maria Gutierrez and has two siblings, fourteen-year-old Katelyn and eight-year-old Geovani Jr. Ayleen was born on December 19, 2005, with a rare, gene-linked brain malformation known as Lissencephaly. (Literally meaning ‘smooth brain,’ lissencephaly is a brain malformation characterized by an incomplete development of typical folds in the cerebral cortex, resulting in the brain appearing unusually smooth. The common associated disabilities of the devastating condition are stunted growth, impaired motor skills, intellectual disability, feeding difficulty and seizures.) On the day Ayleen was born, Maria recalls the immense fear both she and Geovani felt, straight after the joy of their daughter’s birth. “Imagine your doctor telling you that your first-born child won’t be able to walk, talk or run. His exact words were that she would never be a normal child and would be in a permanent vegetative state. He gave her ten years to live.”
Ayleen’s distraught parents discovered that the cause of the brain malformation may have been either an intra-uterine viral infection and insufficient blood supply to the fetal brain (which possibly could have been prevented if discovered by medical clinicians in time) or extremely rare gene mutations. “I will never forget that day,” continued Maria. “I was just devastated and in shock. I was angry too — angry at God. She was just an innocent baby.” However, through an incredible combination of support and fantastic clinical care, Ayleen has managed to defy the odds — and is doing as well as she possibly can, through a fantastic combination of ongoing physical, occupational and speech therapy, which all combine to give her a higher quality of life.
The donation that CURE gave to Ayleen comes from a very personal place for project lead Jacob Beckley and his wife Rafaela, being that they have been friends with Geovani for over a decade, after meeting him at a local restaurant in Chicago. It was there that the philanthropic couple learned of Ayleen and her condition. Devoted father Geovani recently confided in Rafaela that the family were struggling with the logistics surrounding Ayleen’s condition. He was finding it increasingly difficult to lift her out of her wheelchair to put her in the car or carry her into the house. Giovanni had been saving up to get a special van that would provide wheelchair access, and a ramp that could be retrofitted to their house to somewhat ease the burden but would have to wait another year before he had enough funds to complete the costly purchases.
It was around that same time that Jacob asked his wife what she wanted for her birthday. “I told him that it would be amazing if CURE could donate to Ayleen and her incredible family, who deserve a break,” Rafaela reveals. “I already had a birthday brunch set-up for my birthday on November 21st, so we spoke with the restaurant manager to see if it would be possible for the project to present Geovani with a check for $10,000 dollars then. They were more than happy to assist.” Indeed, the whole event was a roaring success, and lots of tears were shed by all — including members of staff and even other diners at the restaurant. “It was a great day that we will never, ever forget,” says Maria.
Unfortunately, due to the nature of Lissencephaly there is no cure, although it is fortunately quite rare, affecting 1 in every 100,000 babies born globally each year — although those statistics come as little comfort for those parents like Maria and Geovani who discover that their beloved child is one of the few affected. The road is hard for those with the condition, and by extension their families, who — along with support from doctors — focus on controlling the many symptoms. That is why donations, such as those given by CURE are invaluable to helping give those suffering a better quality of life, as well as those who care for them. Indeed, the family left an emotional thank you video to the CURE project and the beating heart behind it — Jacob and Rafaela, after the donation. “I’m lost for words,” says Maria in the video. “May God bless you in all that you do.” Indeed, Maria has made her peace with her anger that she felt when Ayleen was first diagnosed. “Nobody wants their child’s life to be hard,” she explains. “But I believe God does not give us challenges that we cannot handle. With the help of my family — especially my parents — I have not lost faith that God will grant me strength, Ayleen is and has always been the happiest and toughest child. She is our miracle.”
Children like Ayleen exist all over the world, suffering from so many different conditions and illnesses that make everyday life extremely difficult for both them and their families. That is why as CURE continues to grow and evolve, it will turn its attention to those in need, no matter what their illness. The project is about changing the world through innovation, care and compassion; and with every new step it takes, it is getting closer to realising those goals.
Now that is a cause worth investing in.
If you want to find out more about CURE token and how you can invest, visit www.curetoken.net or join their telegram at https://t.me/CureTokenV2
This article was written by Stuart Meczes. Please note that Stuart is not a financial advisor and nothing written in this article should be taken as financial advice.
