By Jane Kingsu-Cheng
Not all parents have the means to support their family. It’s even more daunting to receive news that their child won’t be well enough to lead a normal life.
Such is the case of Asha Reine Amil. The only child of Ramir and Regina Amil, she was nine months old when diagnosed with Sturge Weber Syndrome (SWS). It’s a rare disorder that can be easily identified with a facial birthmark or what doctors refer to as the port-wine birthmark. This syndrome also comes with neurological and eye abnormalities as well. But the news didn’t stop there, she was also diagnosed with Klippel-Feil syndrome, which is a bone disorder of the fusion of two more more spinal bones in the neck area.
With the heartbreaking discovery of two rare diseases, Asha’s parents decided that it was best for her mom to stay home and look after her. A one-income household, with a sick child, can take its toll on the family. This hit them hard in 2015. She had lost her sight after being confined for five days, and this prompted them to go see an ophthalmologist. The result was glaucoma and she needed to go through laser surgery. “As much as ayaw ko ipakita na naiyak ako, hindi ko po napigilan kasi panibagong sakit na naman. She was 16 years old at that time,” revealed Regina.
Apparently, Asha has been making jewelry since she was 10 years old. So when she saw her mom crying, Asha suggested that they sell her creations online. Regina admitted, “I sort of belittled her suggestion, kasi malaking funds kailangan (P80,000), but I gave in to her request and posted them. By God’s grace, doon po nag-umpisa ang lahat.”
How can any little girl resist these colorful accessories? They come as a set of necklace and bracelet, with a pendant of your favorite doll. She started out with everyone’s favorite Mickey and Minnie Mouse, Sesame Street characters, and Disney princesses. Now, she has added more trendy dolls inspired from My Little Pony, Lalaloopsy, Shimmer and Shine, Mini Fingerlings, Hatchimals, Shopkins, Trolls, and LOL Surprise. Any girl would be delighted to wear their beloved toys close to their hearts.
It has been four years since they started selling these fun and playful accessories, with the past three years consigning at The Parenting Emporium (TPE). One of the TPE partners, Maricel Cua shared how they came across Asha’s works, “Someone tagged us, asking us to buy. We decided to sell for her instead. We wanted to give her something more sustainable and we promoted the accessories, too! It has opened a lot of doors for her and she was able to finally have enough to attend to her medical concerns and go back to school.”
Despite reaching their goal to alleviate the family’s financial pressure, Asha wanted to do so much more. She’s been hosting beading workshops to get kids into it, both at TPE and at birthday parties. Celebrity kids are fans of her work, and some of them have booked her for their birthday parties, including Team Kramer and the Concio family. She also wants to pay it forward by mounting beading workshops for other children who are in need of medical help.
“Nagbago po ng 180 degrees ang buhay niya. Nakapag-aral siya, nakakatulong sa ibang baga, nakakabili ng gamot,” her mom reiterated. “Kapag alam nya at nararamdaman nya na hirap na ako sa mga problema, yayakapin nya po ako at sasabihing ‘kaya natin ito, mama. Dasal tayo.’ Proud ako kasi kahit marami siyang sakit, hindi siya nag self-pity. Instead, she always looks at the positive side.” And this can be seen in the accessories that she makes—full of life and color.
As of this writing, Asha has been rushed to the hospital due to another attack and her parents are praying that she’ll be home soon. Interested parties who would like to help support her medical needs by ordering can follow them on Instagram @remireginareine.