Help Honor our Kaya Girl ❤️ Precious Journey

On December 20, 2023, Kaya Jana Humbert was born at 2:00 PM, weighing 8 lbs 4 oz and measuring 21 inches. She came to us perfect in every way, and her presence brought boundless joy into our lives. But on January 3, 2024, our world was forever changed when we learned that Kaya had been diagnosed with a rare and aggressive illness: Sphingosine-1-phosphate lyase insufficiency syndrome (SPLIS). Kaya is one of 93 in the world with this condition. This rare genetic disorder affects the kidneys, adrenal glands, thyroids, nervous system, and brain and is caused by mutations in the SGPL1 gene.

From that moment on, Kaya and her family, including her devoted parents, Yojana and Christophe, and her siblings, Kamali and Kehlani, have faced an incredibly difficult and emotional journey. Over the past year, they have spent countless days in hospitals, working tirelessly with doctors, and researchers searching for every possible remedy to help Kaya. Kaya has contributed a great deal to the advancement of SPLIS research, with the hope of a gene therapy being available. Yojana and Christophe have sacrificed everything to care for Kaya, while also balancing the needs of their two other children, Kamali and Kehlani. The physical, emotional, and financial toll on the family has been unimaginable.

Throughout this journey, Kaya’s grandmothers, Yeya (Elizabeth) and Mamie Lulu (Lucette), have stepped into an immense gap, spending days at a time with her so that Kamali and Kehlani can also have time with their parents. Alongside them, aunties, uncles, and loved ones have rushed to be present, offering their unwavering support. Beyond them, friends, neighbors, family, and countless others—both near and far—have poured out their prayers, love, and heartfelt presence, surrounding us with strength and comfort.

Despite their relentless fight, Kaya’s condition has affected her brain, and the brain is no longer allowing her body to work correctly, the family now has to prepare for the inevitable loss of their Kaya girl. Alongside the overwhelming grief, they are now facing significant medical bills and funeral expenses.

On March 7, 2025, at 5:22 PM, our Kaya girl passed away surrounded by her family, holding and praying over her as she left this physical world. Kaya is now with the Lord, free of all manifestations of SPLIS able to play, laugh, and experience joy. Though our hearts are broken, we find solace in knowing she is in His care. As we say goodbye to our sweet Kaya girl, our prayer is to live lives that honor her memory, and please God so that we may join her in eternity one day, and work diligently here so no other family will feel this pain.

We are asking for your help to ease the financial burden on the Humbert family during this unimaginable time. Your donations will allow them to focus on cherishing their final moments with Kaya and supporting one another as they navigate this heart-wrenching journey.

How Your Donations Will Help:

- Funeral expenses to honor and celebrate Kaya’s precious life.

- Medical bills from the year-long battle for Kaya’s health, including ongoing support of her rare condition, SPLIS.

- Family expenses related to preparing for this heartbreaking loss.

We know that many of you have been touched by the Humbert family’s strength and love for Kaya, and we are grateful for any help you can provide. Every donation, no matter how small, will make a meaningful difference.

A Message from the Family:

Thank you for your prayers, love, and support as we walk this unimaginable path. Your kindness has surrounded us, offering encouragement in moments we never thought we could face. We surrender our heartbreak, our suffering, and our family to the Lord, trusting in His plan. Our deepest prayer is to live a life that honors Him, so that one day, we may meet Kaya again—healed, whole, and free from the pain of SPLIS—in eternity.

Please share this fundraiser with your network and help us honor Kaya’s memory, support the Humbert family, and give them the peace of mind they need as they prepare to say goodbye to their precious child.

A Bible Verse for Comfort:

“The Lord is near to the brokenhearted and saves the crushed in spirit.” — Psalm 34:18

Thank you from the bottom of our hearts for your love, support, and compassion.