A Gift of Life, Health and Hope for Hailee After Life-Altering Diagnosis
10.1.2024 | Ashley Speller
At 3 years old, Hailee began complaining of pain in her legs and neck. Instead of running around like the other kids, she frequently asked to be carried by her parents and was small for her age.
“We started to notice there were some things going on developmentally,” explained Tiffany, Hailee’s mom. “Physically and neurologically, everything seemed fine, but her elbow shape and hands were growing differently.”
She was also shorter than her peers, but it wasn’t an immediate concern for doctors because Tiffany is also petite.
However, in January 2019, things took a turn when Hailee developed a fever and refused to walk due to the intense pain in her neck.
Jason, Hailee’s dad, brought her to Seattle Children’s Emergency Department where she received numerous tests over several days including blood work, CT scans, ultrasounds and MRIs.
“We tried to imagine all the things it could be,” recalled Tiffany. “But the actual diagnosis was far more serious than anything we could have imagined.”
Hailee receives care at Seattle Children’s for Morquio A, a rare condition affecting nearly every part of her bodyFour days later, doctors told Jason and Tiffany that Hailee had a rare genetic disease called mucopolysaccharidosis type 4A, also known as Morquio A syndrome or MPS Type 4A.
Morquio A is a lysosomal storage disease (LSD) where the body doesn’t produce the enzyme used to break down sugar chains, causing those molecules to accumulate in bones, organs and soft tissues.
LSDs occur in about one in every 5,000 to 7,000 births, but Hailee’s type is one of the rarest.
“How I describe Hailee’s disease to people is that we all have energy and make energy, and our cells go through that process of metabolism,” Jason explained. “In that process, there's garbage as a byproduct and most people’s bodies have ‘garbage trucks’ that are enzymes which take the garbage out of the body. Hailee doesn’t have that, so the garbage builds up and clogs her skeletal systems, causing deformities and an inability to grow.”
Approximately one out of every 200,000 to 300,000 babies are born with this condition. It affects nearly every part of Hailee’s body except for her brain, and there is currently no cure.
Hailee, pictured at Seattle Children's North Clinic in Everett, Wash., attends an Audiology appointmentIn the midst of receiving Hailee’s diagnosis, her family was already grappling with the challenging news that Jason had lost his job.
“It was so much life-changing information all at once and we were terrified,” recalled Tiffany. “To try to even comprehend the financial implications was completely overwhelming.”
Jason and Tiffany were encouraged to talk to Seattle Children’s Financial Assistance team to see if they qualified for Uncompensated Care which covers medical expenses so families can focus on their child’s health, rather than the cost of restoring it.
The exhausted parents found the application process surprisingly simple and straightforward and were overcome with emotion when they were approved.
“In my life, I have experienced financial services at other hospitals in the country, but Seattle Children’s just does it right,” said Jason. “It was the most magical experience anyone can ever have when they're in need. It was a relief, and I gave the advisor a huge hug.”
(Left to Right: Tiffany, Jonah, Hailee, Jason) The uncompensated care program at Seattle Children’s helps support families when they need it mostWhile Morquio A has no cure, Hailee receives a treatment called enzyme replacement therapy (ERT) through a port in her chest which acts as a ‘garbage truck’ to help her body get rid of waste. These infusions occur every week and can last up to seven hours each time. Hailee will need ERT for the rest of her life.
Today, Hailee is a bubbly 9-year-old student who loves singing, playing Roblox and dreams of YouTube stardom. She has undergone a series of major operations, including spinal cord decompression, knock-kneed and double hip surgeries. She uses hearing aids for support and a power wheelchair for independent mobility – both are sparkly pink.
“She’s always trying to make friends,” added Hailee’s older brother, Jonah. “Wherever we go, she’ll ask people if they want to be her friend because she likes to be friends with everyone.”
Hailee lives with a life-altering diagnosis that will require ongoing care and weekly infusions for the rest of her lifeWith the financial burden eased, Hailee’s family is focused on the positive days ahead. They have even joined other familes to raise awareness about Morquio syndrome and are inspiring others to support Seattle Children’s through giving or by joining community events like the annual "I Can and I Will" guild run on Oct. 20, 2024.
“Hailee’s future is bright,” said Tiffany. “She has this ability to light up the room and just radiates joy and happiness. I hope she gets to share that with the world.”