Asha Reine Amil is a real-life warrior princess. She was born with multiple life-threatening medical conditions. At 11 months old, she was diagnosed with brain malformation, Sturge Weber syndrome and Klippel-Trenaunay syndrome. These are rare conditions that cause severe scoliosis, glaucoma, epilepsy, joint deformities.
Nevertheless, she remains positive all throughout her trials. Two years ago, when all hope seemed lost, Asha thought of sharing her passion for jewelry making and turning it into a business to help raise funds for her growing medical bills.
How Asha’s Ordeal Began
When Asha was born, she had port wine stains almost covering her entire body. The family was advised that these “birthmarks” would soon fade after a few months. She also had slight deformities, but since they lacked financial means, no further tests were done--not even newborn screening.
At around fifteen days old, Mommy Regine noticed that Asha’s belly was unusually large, “like a balloon that’s about to pop”. Soon, there was blood around her belly button, and the family rushed her to a nearby clinic, where they were advised to proceed to the hospital. They stayed in Philippine General Hospotal for two weeks until she normalized, then they were discharged.
Nine months have gone by, Asha was doing fine. She was hitting infant milestones like rolling over and sitting at the appropriate age. But one afternoon, she was crying inconsolably and she started shaking. The shaking stopped for a while. When the second attack came, it was stronger and she was losing oxygen and started turning blue.
After being rushed to a nearby clinic, they were advised to proceed to Philippine General Hospital so they can be given the proper medication to control the seizures. Due to financial restraints, they were unable to request for further tests to determine the cause and were discharged the following day. Asha was only nine months old when she suffered her first seizure.
Just as when everything seemed to be back to normal, Asha had another seizure at 11 months old. This time, the family was able to request for a CT scan, and it was then that they found out the left side of her brain was smaller, she was suffering from brain malformation. The “birthmark” she had when she was born was a symptom of Sturge Weber Syndrome, and the slight deformities was symptomatic of Klippel-Trénaunay Syndrome.
There are no treatments for her rare conditions. Preventive maintenance and strict monitoring is required to control her seizures and catch others symptoms like glaucoma at an early stage. Even a slight fluctuation in her weight requires adjustment in medication. Routine checkups are important. Unfortunately, the lack of funds restricted them from visiting their doctors.
The Battle Continues
When Asha was five years old, her worst seizure attack happened. She was not able to move half of her body and she was stuck in a comatose-like state for three days. Doctors had to insert NGT to prevent dehydration. On the third day, she woke up early in the morning, extremely parched and requesting for water. She said, “Nakita ko si Jesus and he hugged me.”
She remained in her bed unable to move for five days. Mommy Regine would invite Asha’s friends over to play. Their company pushed Asha to move and get better. Her determination even inspired her to remove her NGT and resume normal eating, slowly.
After this traumatic incident they have been in and out of hospitals and faced many heartbreaking situations. From experiencing an overdose of anti-convulsion medicine in a small clinic to being neglected and unattended to in government hospital, the family vowed to find a way to seek better medical support for Asha.
Two years ago they faced another obstacle, Asha was diagnosed with glaucoma. Asha needs to have laser surgery to save her eyesight, a very expensive treatment that the family cannot afford.
The Silver Lining
The latest development of Asha’s medical journey was the breaking point for Mommy Regine. While they were on their way back from the doctor’s visit, Asha seeing her mother’s agony, persuaded her mother into showing her jewelry creations on Facebook. She was hopeful that her creation will be able to raise funds for her medical procedure and sustain her daily needs, thus the account Lalaloopsy by Asha was born.
Soon her collection was made available thru The Parenting Emporium, and it is through them that The Nest Attachment Parenting Hub was able to meet Asha.
She is a ray of sunshine in the darkest of storms. Her resilience, her efforts to better her situation and her passion to finish her studies are inspiring. She is a testament that with the help of the Lord and with a positive outlook, He will help you through your troubles.
There are wonderful angels all around her--friends, family and doctors who willingly help and continue to share their blessings in order for her to live a meaningful and longer life. She was also fortunate enough to be the 2000th Grant Story recipient of Make-A-Wish foundation.
The Next Steps
Asha’s journey is far from over, her medical needs are constant and she continues to develop new clinical manifestations as she gets older.
Everyday is a different story for the family but you can help, we can give her hope.
Her jewelry collection is available in our shop and 100% of the proceeds will go directly to her medical expenses.
Just click on the link Jewelries by Asha and you can start helping out today.