Hailey's Journey

Hi, my name is Hailey and I am 3 months old. I am the youngest of 4 children to my parents Tyson and Angela. I am Mommy and Daddy's miracle baby. On October 12, 2021 at Kona Hospital I came into the world. Doctors discovered a mass on my lower back. I was diagnosed with Lipomyelomeningocele with a tethered spinal cord. I was referred to the mainland for surgery due to the complexity of my case.

 

Lipomyelomeningoceles is a form of spina bifida & is present when a baby like me is born.

Lipomyelomeningoceles happens in only 1 to 2 of every 10,000 babies born in the United States.

 

Babies develop lipomyelomeningoceles early in their mother’s pregnancy – during the fourth to sixth week. There is no known cause. The genes babies get from their parents do not play a role. My mommy and daddy had a normal pregnancy with no complications noticed at multiple prenatal appointments. This was a very unexpected surprise.

 

Babies who have lipomyelomeningocele with a tethered spinal cord need surgery.

Left untreated this can lead to neurological damage over time, especially during growth, because growth can stretch the tethered spinal cord. Slowly, the child may lose sensory and motor function. The feet may get weaker. Bladder and bowel function may get worse or be lost. These changes may last forever.

 

The good news is that Mommy and Daddy got me an appointment to see a specialist at Boston Children's Hospital. They are the best of the best! My Hawaii family will be displaced to Boston for an extended period of time for surgery and post-op healing. I will also need to see my doctors yearly for follow-up visits as I grow and develop.

 

Will you help my family? Anything you can bless my family with will truly be appreciated.

 

Monetary donations mean the world to us.

 

In lieu of monetary donations, Hawaiian Airlines miles would also be a great help. Please contact this page directly for a donation of miles.

 

Thank you so much for listening to my story. My heart is grateful for your encouragement so that I can live my best life.

 

Love,

Hailey