Asha Reine Amil, now 26 years old, was born with Sturge-Weber/Klippel Syndrome. It’s a rare congenital condition that affects the skin, blood vessels, and sometimes the brain. If you are like me, this is probably the first time you are reading about this condition and finding out how bad it is. That’s because, not only is it rare, but it also seems to only occur in Western countries.
Despite the challenges that came with her diagnosis, Asha has grown up surrounded by the love, care, and unwavering hope of her parents, Mommy Regina and Daddy Ramir. Her journey had not been easy for her and her parents, as hospital confinements, medical treatments, and the need for constant monitoring regularly marked it. Despite this genetic condition being irreversible, the Amil family lives each day as if it were a gift to open with fresh eyes and loving hearts. As long as they have each other, they continue to hope for the best.
Who is Asha? Watch this reel below.
Asha’s Biggest Dream: To Go to the Beach
For many people nowadays, going to the beach is as easy as “feeling” it. They can just drive to a nearby resort, or they can afford to book a flight and stay for several nights in Boracay, Palawan, Siargao, or even Bali or the Maldives.
But not for Asha.
As a young girl living in their quiet suburb and deterred by her ailments and the financial burdens that came with them, going to the beach seemed like a far-fetched dream. It’s like a craving she couldn’t eat or a star she couldn’t reach.
Asha and her family live in Muntinlupa City in Metro Manila, which is located inland. One cannot spot the sea for miles. She could just imagine the sun on her skin, the sensation of stepping on fine sand, and playing in the sparkling, salty water. Closing her eyes and inhaling the warm breeze was merely an imagination – merely a wish that her heart made. While she had a happy and secure childhood that her parents could provide, there is that longing in her heart to inhale the Vitamin Sea that she wanted to be fulfilled.
Sharing the Dream
Knowing about her only daughter’s heartfelt wish, Mommy Regina wanted so much to grant it. As the mom, she would do anything to make her child happy.
But how?
Living off her husband’s meager salary as a company driver, how could she possibly bring her daughter to the beach when the nearest resort is nearly a hundred kilometers away? And they don’t have their own private vehicle, something necessary for Asha to undertake a long drive. Her condition has made her immunocompromised, which makes any exposure to an infection in a crowded space many times worse for her.
Then Mommy Regina learned about the Make-A-Wish Foundation. It is an international non-profit organization that grants wishes to critically ill children. While it was founded in the United States, it has chapters in other countries, such as the Philippines.
Mommy Regina then sent a letter to them sometime in August of 2016. She received a reply from a Make-A-Wish representative in November, and they agreed to meet the following month.
A meeting with a casual interview happened at a fast-food restaurant in Alabang in December. The shy Asha, who has speech difficulties, told the representative about her wish. It was a fruitful meeting with much assurance, so both Mommy Regina and Asha became hopeful.
Making the Dream a Reality
Several months later, Mommy Regina received exciting news — Make-A-Wish had already found them a wishmaker! The donor was a very generous Korean national who was willing to fly the family to Cebu and let them stay in a beach resort—all expenses paid!
However, May 2017 was election time, and Asha’s cousins were about to start school. So instead of Cebu, the family settled on going to the Coral Beach Resort in Batangas. The intention was for Asha to celebrate her 16th birthday there.
The night before their scheduled beach trip, the family home was abuzz with excitement. They prepared their personal belongings and excitedly waited for the next day to come.
A service vehicle came by to pick them up early. They loaded the van with their belongings along with Asha’s cousins and nieces. There were 10 of them.
The wishmaker granted all of them an overnight stay at Coral Beach Resort, along with lunch and dinner, which was going to be Asha’s advanced birthday celebration.
Happiness Comes in Waves
It was one bright and clear summer day in May 2017. The vast ocean was beckoning, and the far horizon was overwhelming. Asha gingerly stepped out of the vehicle amidst the buzz of her family’s excitement, relishing the fact that her wish was finally happening.
On the ground, she paused, closed her eyes, and inhaled the salty breeze, breathing a prayer of thanks to God who allowed her the pleasure of experiencing the beach for the very first time. The water was clear near the shore, but the waves were rolling in the distance. She also thanked God for Sir Jumong, who was God’s channel of blessing—her wishmaker.
The family enjoyed a sumptuous lunch and then a dinner celebration at the resort, all arranged by Make-A-Wish and funded by Sir Jumong. While each day is already a milestone for someone like Asha, who has these two conditions together, her sweet 16th birthday was definitely the most unforgettable celebration she has ever had.
That was already 10 years ago, but Asha and her family continue to relish the memories, especially the kindness that has been extended to them. And they are all praises to God and the Make-A-Wish.
WATCH: Asha’s Beach Birthday Wish Granted
The Everyday Struggle
When Mommy Regina was pregnant, she had high hopes and dreams for her first child. But when Asha was born, Mommy realized that her little one was extra special. Asha’s skin had dark red patches that contrasted with her light complexion, a visible mark of her condition. At 11 months, it was confirmed that Asha has Sturge-Weber/Klippel Syndrome.
Despite her limitations, Asha was sent to regular school near their house because her neurologist advised that it would be good for her mental and emotional well-being to grow up surrounded by peers. And it was indeed a good idea because she was able to make life-long friends who came over to her house or with whom she could go out to the mall or watch a movie.
However, Asha could not cope academically, and it is not just because of her absences. Her condition caused frequent seizures that kept damaging her brain cells, which led to her developmental delay. Her legs are not equal in size, which affects her balance and also puts pressure on her larger foot. She also needs special lenses because she has glaucoma. Adding to that list are the frequent hospital confinements with reasons ranging from a common cold to epilepsy, which is no wonder that her education was hindered.
During the pandemic, they homeschooled her so she could stay safely at home.
In today’s society, Asha is already a full-grown adult at 26 years old. But she still needs the round-the-clock care of her mom. Mommy Regina never had another child because her hands are already full with Asha’s needs.
Making Fashion Jewelry
Meanwhile, Asha also earns a living. Yes, you read that right. She helps out the family finances by making bead jewelry, which she sells on Instagram (@ramireginareine) or at bazaars. Whatever sales help her maintenance medication and other things.
Her Instagram account led her to be discovered by some celebrities, like the power couple, Mr. Gary Valenciano and Ms. Angeli Pangilinan-Valenciano, and Ms. Angel Locsin, who have ordered some of her products and helped Asha in so many ways.
But her biggest benefactor is actress and chef Judy Ann Santos, who ordered mask straps during the pandemic. She had been the family’s biggest supporter ever since.
Her Unsinkable Fighting Spirit
Asha’s condition makes every day a struggle for survival. Before our virtual interview (Oct. 23), she was released from the hospital only a few days prior because of a cough. At the time of this writing (Nov. 9), she is back in the hospital again for a seizure, gastroenteritis, and dehydration. Sometimes, she no longer wants to tell her Mom how she is feeling because she doesn’t want Mommy Regina to worry.
Nevertheless, Asha’s bright spirit and courage continue to shine through. She faces each day with a smile that speaks of quiet strength and a heart full of dreams and faith, inspiring everyone around her with her resilience and positivity. She is still her parents’ pride and joy.
I asked her if she had something to say to young people who find life so hard these days, and all she can say is, “Always pray.”
“Always pray.” ~ Asha
Such a pure answer from a pure heart that relies on God’s mercies every day. May her story bless you and encourage you to be grateful for every silver lining, every single day.
Read: Revisiting the Rights of a Filipino Child in the Digital Age