Eight-year-old Krishlae Amber is an endearing bundle of affection and sass. With a heart as warm as the morning sun, her favorite thing in the world is to give her family hugs and kisses when she wakes up, before she sleeps and every moment in between. Her big sisters say Amber is too clingy — that she's a master of finding her way into the hearts and arms of her family, no matter where they may be and sometimes even when they’re in the bathroom. She’s as sweet as she is clever.
The world is so big and even bigger as we celebrate World’s Down Syndrome Day. Every child has a rightful place in the world that deserves respect and recognition. Just like beautiful Amber, who will see the world more clearly as she grows into a young lady, the world must be prepared to provide a fostering environment that acknowledges them as individuals first, before their differences.
Birth
Twenty-four-year-old Vhenna Marie Mantilla, the eldest sibling in her family, shared that Amber is the glue that holds their family together. When Amber and her twin, Kristoff, became part of their family, not a single day was dull. Each day was an opportunity to learn the journey of raising a child with Down syndrome. Just as there is no instruction manual for the complexities of adulthood, there is also no guidebook for the beautiful challenges and rewards of nurturing a child with special abilities like Amber's.
Vhenna recalled being 17 when she learned she would be a big sister again to twins. She remembered crying because her mom, Marinette, was already in her early 40s at the time, which could lead to complications during pregnancy and childbirth. Despite the fear, Vhenna's parents desired to expand their family, believing that the twins would bring even more joy and meaning to their lives.
Amber was born with complications in her heart and thyroid. The family had to witness a fragile baby connected to various tubes and machines. Vhenna recalled how Amber had to stay in the neonatal intensive care unit (NICU) for two weeks while Kristoff, her twin, was safely delivered and brought home healthy. It was a mixture of tears and happiness for the family.
"Amber faced a critical moment at birth. For twenty seconds, she wasn't breathing, her organs unstable. There was no cry, no response. She spent two weeks in the NICU, her condition closely watched," said Vhenna.
The uncertainty of Amber’s life was something the family was unprepared for. It comes at a great cost emotionally, but this is Amber’s story of survival. From there on, the family’s miracle baby would continue to defy the odds growing up.
“There are many ways to celebrate World Down Syndrome Day, and one of the simplest things to do is to be kind to individuals with Down syndrome. On a personal note, I am truly grateful to have my sister in my life. She is my little hero,” said Vhenna.
Struggle
With all the tough times Amber had to fight to survive, she is exactly where she belongs right now: in a family that is full of love. Vhenna said that patience and strength were taught by no one but Amber alone.
If there’s one reason that Vhenna is the person she is right now — loving and patient towards her friends, special someone and family — she said it’s because Amber has shown her the pureness of love.
“Towards our family, we have developed another level of bond since she came into our lives. She became the light of our house and was one of the many reasons why we all worked hard for ourselves and the family's dreams,” said Vhenna.
Blessing
Vhenna expressed that her parents' efforts and her siblings' affection for Amber have paved the way for her to realize her true potential. With dedication and love, they have ensured that Amber receives the best education and therapies available, turning seemingly impossible challenges into achievable milestones. Miracle after miracle, Amber is now completely healthy.
“Amber now has a stable condition and is healthy. Her heart condition and thyroid health are gradually getting better. Currently, we are monitoring her congenital cataract, and she is beginning to learn speech. Her behavior is also showing marked improvement as she started her occupational therapy,” said Vhenna.
Vhenna used to love carrying baby Amber in her arms all day even when it would numb her arms. Amber, now stronger and heavier with each passing day, is what the family hopes to continue to see. Being a big sister to Amber was Vhenna’s greatest blessing.
“Every night, we have a routine to play in their room and bond, laugh or simply hug each other. I always ensure that despite my busy schedule, I make time for her,” said Vhenna.
Amber has a mind of her own, knowing what she likes and dislikes. Most of the time, she's a sweet girl who has developed a love language Vhenna has become familiar with. Even in the face of tantrums, admittedly sometimes a great challenge for the family, Vhenna wouldn't trade having Amber as her baby sister for anything in the world.
Awareness
It’s true when they say they require love. Sometimes you lose all strength to understand their behavior, but being around children with developmental differences associated with an extra chromosome 21 is enlightening. No one is ever truly prepared to be a parent or a big sister to them, but in their presence, they found the strength and love they never knew they had.
Vhenna said increasing awareness and understanding about Down syndrome people can help combat stigma and misconceptions.
“I believe this is the most crucial thing and the very first step that should be taken, as it will lead to the most essential outcome: protection for these individuals who are innocent in a sometimes cruel world,” said Vhenna.
Around the world, positive campaigns and conversations are held every March 21 to celebrate World Down Syndrome Day and highlight the importance of inclusion, equality and empowerment for individuals with Down syndrome. They can be fully capable individuals, qualified to participate in and contribute to society in ways that are both beautiful and valuable.
Now, Vhenna and her siblings, Anne, MJ, Austinne and Kristoff, along with their parents Marinette and Norven, have Amber’s infectious laugh, which helps them get through hard days. With eyes so hazel and a smile like her mother’s, Amber is her own person and every bit a part of their family.
The Mantilla family sees Amber as a child who is more than her therapies and medical appointments. Like a literal amber that glows in the night, she sparks the transformative beauty of love most extraordinarily.