A sweet little boy with a bright, curious grin,

Kaoni brings joy from the outside and in.

He giggles, he coos, he lights up the day—

But life threw a challenge that won’t go away.

Katie Fossum’s world changed when her 11-month-old son, Kaoni, was diagnosed with Hypomyelinating Leukodystrophy Type 10 (HLD10) — an extremely rare, progressive genetic disorder that disrupts the brain’s ability to produce enough myelin, the protective sheath that insulates nerves and supports normal brain and nerve function. Without sufficient myelin, children with HLD10 face a wide range of neurological challenges, and unfortunately, there is currently no cure or disease-specific treatment available. Kaoni is one of only about 20 known individuals in the world with this exact diagnosis.

HLD10 is characterized by progressive microcephaly, delayed psychomotor development, and intellectual disability. Symptoms can vary, but typically include developmental delays — children may struggle to reach milestones like sitting, crawling, or walking — as well as motor skill difficulties, muscle weakness (hypotonia), and problems with coordination and balance. Many children also experience speech delays, cognitive impairment, and in some cases, seizures, vision or hearing problems, and skeletal abnormalities. Over time, the condition leads to progressive neurological decline, making early supportive care and access to specialists critically important.

This diagnosis has brought immense uncertainty into Katie and Kaoni’s lives, but it has also revealed their strength and determination to keep going, one day at a time.

Katie, a loving and experienced mom of six, knew something was off when Kaoni stopped gaining weight. He began refusing food, and vomiting often. After being admitted to the University of Iowa Children’s Hospital in April, he was placed on a feeding tube — which finally helped him begin to grow. Kaoni was put through a litany of tests- X-rays, MRI, a swallow study, and more. There were weeks of waiting and finally, through genetic testing, Kaoni was diagnosed with Hypomyelinating Leukodystrophy Type 10.

Since learning of Kaoni’s diagnosis in late May, Katie has been navigating this overwhelming new reality — juggling complex medical care, tube feedings, and frequent appointments traveling to The Stead Family Children’s Hospital in Iowa City and to Lurie Children’s Hospital of Chicago. She is Kaoni’s full-time caregiver, around the clock, and with five children still at home, she simply cannot work outside the home.

As part of Kaoni’s care, Katie was trained by medical staff on how to properly insert, use, and maintain his nasogastric (NG) feeding tube — a thin, flexible tube that goes through his nose, down his esophagus, and into his stomach. This tube is currently the only way Kaoni receives the nutrition he needs to grow, and he is on a specialized formula. Depending on where they are, Katie administers either bolus feedings, where formula is gently pushed through the tube with a syringe, or gravity feedings, where it slowly drips in through a feeding bag and pump. Both methods require constant attention, especially because little Kaoni is quick to pull at the tube. If it comes out, Katie has to reinsert it with care — a process that must be done just right to ensure safety and comfort. It’s a delicate and demanding task, but one Katie has taken on with grace and fierce dedication.

This GoFundMe is here to support Katie and Kaoni (and their family) through this difficult journey — to help cover essential needs, medical travel, and provide a bit of financial breathing room during a time when all of Katie’s energy is devoted to her son’s care. Because Hypomyelinating Leukodystrophy Type 10 (HLD10) is so rare, there are currently no medications or disease-modifying treatments available. Care is supportive and focused on managing symptoms and improving quality of life. So far, Kaoni has been seen by specialists in both Iowa City and Chicago, but Katie has also been referred to The Leukodystrophy Center at the Children's Hospital of Philadelphia — one of the few places in the country with deep expertise in this rare condition. Unfortunately, due to financial strain, a trip there isn’t even an option right now. Your donation can help make that kind of vital care more accessible for Kaoni and give this family a fighting chance at the best support available.

If you have some love you’re willing to spare,

A share or a dollar shows how much you care.

For a mama so strong and a bright, loving boy,

Your kindness can bring them a glimmer of joy.

How Funds Will Be Used:

Every dollar raised will go directly toward supporting Katie, Kaoni, and their family as they navigate life with Kaoni’s rare diagnosis. Here's a breakdown of how your generous contributions will help:

Fundraising Goal: $18,000

This goal provides a strong foundation to cover immediate and short-term needs while opening the door to essential specialty care that could make a major difference in Kaoni’s long-term quality of life. If more is raised, it will continue to support Katie and her family’s ongoing medical and caregiving journey.