Snarky Hapa

12/19/2025

12/10/2025

Merry Merry!

12/20/2024

Having a medically complex child means that we are in for a lifetime of treatments, surgeries, and specialist visits. The financial burden did not end for us when Hailee was diagnosed; that was just the beginning. Without the assistance of Seattle Children’s Uncompensated Care fund, we would be saddled with insurmountable levels of medical debt and we would have struggled to meet the basic needs of our family. Thankfully, because of uncompensated care, we have been able to afford other things our family desperately needed. After 18 months of having a power wheelchair, we were able to qualify for a loan and purchase a wheelchair accessible vehicle so Hailee can be independent everywhere we go. We were finally able to take our first real family vacation to Japan in 2024 (using all my airline miles lol) and give our kids a connection to their heritage. Instead of struggling to meet our basic needs in a life overshadowed by rare disease, Uncompensated Care has enabled our family to live above and beyond my daughter’s diagnosis and find joy when we needed it most. This would not be possible without the generous support of so many donors. So this holiday season, please donate to Seattle Children’s Uncompensated Care fund so that you can help other families like ours live above and beyond their diagnoses. I promise you, it will change lives! https://care.sc/helpkids

12/03/2024

When our sweet Hailee was just 3 years old, she spent a week at Seattle Children’s Hospital undergoing a battery of tests, and was eventually diagnosed with a very rare genetic disease: Morquio A. Our life changed in an instant. We learned that there was no cure for her disease and that it would get worse over time. We learned that there was a treatment available to slow the progression of the disease, which would require Hailee to receive a med infusion every week for about 6 hours. We learned that Hailee was going to need neurosurgery within a couple of weeks to decompress her spinal cord and prevent her from becoming paralyzed.

Nothing can prepare a parent to receive a life-changing diagnosis for their child. It’s shocking and terrifying, you feel sadness, anger, fear, grief, jealousy and overall it’s just extremely overwhelming. And while we were going through all of these emotions we were also riddled with stress and were honestly terrified about how much the hospital stay, tests, infusions, and surgeries were going to cost because the week before Hailee was diagnosed, my husband unexpectedly lost his job.

When children are in a medical crisis, the last thing parents should be worrying about is how they are going to pay for it. And thanks to Seattle Children’s Hospital’s Uncompensated Care program, not only did we never have to worry about how much any of it was going to cost, we NEVER even saw a bill. Our family was approved for financial aid on the spot the day Hailee was diagnosed, and we were able to leave the hospital and focus completely on our daughter and what we needed to do next for her care.

So during this giving season, I ask you to please DONATE DONATE DONATE to Seattle Children’s Hospital so they can keep helping families like ours focus on what matters most - our kids!

Help us reach our goal! Your support will make a meaningful difference. Every contribution brings us closer to success. Join us today and be part of something impactful.

04/24/2024

Sooooo I’m back for my 4th biopsy (3rd MRI guided biopsy)! Apparently last time after they cut me open and stabbed me with lidocaine I moved .5 inches prior to the final scan and they had to cancel it. So this time I have taken alll the meds beforehand in hopes that I’m calm and pain free and won’t barf and they can bullseye this fu***ng spot. Hopefully the 3rd time at this spot will be the charm. Fingers crossed for all the good things. Ladies check on your bo***es.

04/10/2024

Waiting to do my third breast biopsy in the last 6 months. Ladies, check on your bo***es!!

01/07/2024

Aaaand here we go. For this annual episode of respiratory roulette we are in the PICU. Hailee has developed pneumonia in her right lung and her little body is working overtime to fight the infection. Send all that healing energy her way!

11/29/2023

After so many years of being the caretaker, it’s now my turn for surgery! An abnormal mammogram turned into a follow up mammogram turned into a biopsy turned into ADH turned into surgery today. Grateful to have Angie here to stand in for my mom ❤️❤️❤️. Grateful for my brave surgical pro daughter for helping me to be brave too. Grateful for my mom looking out from above and helping me find this early. Grateful to Jason for being my support through it all. See you fools on the other side.

05/16/2023

Today is MPS Awareness Day! My daughter, Hailee, was diagnosed with Mucopolysaccharidosis Type 4A shortly after she turned 3. There is no cure for her rare disease, which will get progressively worse over time. We are fortunate that there is a treatment available to help mitigate the impact of the disease and prolong her life. As you can imagine, visits to her hospital and alllll the specialists are frequent. This disease has completely changed all of our lives. Hailee has had a number of major surgeries as well as some minor ones. She’s a little person and requires the use of a wheelchair because of the fatigue and pain brought on by MPS. These photos are from the most recent big change, which was getting Hailee’s first hearing aids! She chose the color combo and glitter confetti bits all on her own. Our life always feels chaotic and stressful but I am so thankful for her and the joy she radiates from every fiber of her being. She is strong and brave and full of smiles.

04/25/2023

Aaaand the last magical post of was having a former student as one of the counselors! What a crazy surprise! Thank you for being such a fun and memorable part of our first camp experience!

04/22/2023

When Hailee and I were in the ER at Children’s at the end of January, our attending physician happened to be the Medical a director of Camp Korey. She told me Hailee needed to come and I had to apply and here we are for our first Family Weekend for kids with life-altering medical diagnoses. This place is magical and we are so thankful to be here.

04/15/2023

Getting ready for the .