Aloha and mahalo for taking the time to read about our Grace. My name is Mckenna and Grace Kawailehua Panui-Tafoya is my niece. Shea and Terence Tafoya of Kauai are her parents. Ezekiel is her older brother. My sister is an amazing mother. Shea has been by Grace side through it all. I love watching her care for Grace, she really is amazing! So intuitive to her needs and care.

Grace was born on May 14th, 2024, weighing 5lbs 4oz. She has been at Kapiolani NICU for 2 months. While they have tried their best to get her well enough to go home, she now needs to be transported to a hospital in the mainland to undergo heart surgery and potentially an airway surgery.

When my sister, Shea was 19 weeks pregnant, she found out that Grace had a heart defect. At 34 weeks, Shea moved to Oahu and delivered at 36 weeks at Kapiolani. When Grace was born, she was not breathing and we soon found out that she had an obstruction in her airway. Her first surgery was at three weeks old to open her nasal passages.

After finding other abnormalities in Grace, her doctors suspected she had a very rare genetic condition called CHARGE syndrome. They sent in her DNA to be tested and a few weeks later it was confirmed. Each letter of the syndrome stands for a different abnormality. A child could have a few or all 6 of them, and the severity of each varies as well. She has been confirmed for the first three letters. C is for Coloboma of the Eyes, this can affect any part of the structure of the eye. For Grace, she has a coloboma of the optic nerve in both eyes, we won't know how this will affect her vision until she is older.

H is for Heart defect. Grace has 2 holes in her heart and an open duct (ASD, VSD, and PDA) in many cases these don't need to be addressed till the child is 6 months to 1 year of age. But for Grace, her heart is causing more harm now. A is for Atresia Choanae, This is the airway obstruction that she has had surgery for. R stands for Retardation of growth, we don't know how her growth will be affected. G is for Genital abnormalities, and Grace does not have this one. And the E stands for Ear abnormalities, and while her ears are a little different, we don't know yet how her hearing is affected.

Grace is currently intubated on a ventilator. She also has another obstruction of her airway called Laryngomalacia. The ENT doctor says it should resolve in 1-2 years as she grows, but recommends she undergo a Tracheostomy in the meantime. This is another surgery that she would need after her heart.

During this whole process we found out that Kaua'i does not have the infrastructure to support babies with Trache Tubes. It took a lot of pressure from our Social workers but we eventually got a company on Oahu to agree to ship medical supplies to us on Kauai.

Although they will not supply for a ventilator. She will need to be breathing without a ventilator for us to go home.

Terence, Shea’s husband has been working very hard to support them and make sure all the bills have been paid. Now that they won't be a 20min plane ride away, He will need to take some time off so they can all be together during her surgery. Ezekiel has also not been able to meet Grace in the flesh and we were told that when Grace goes to UCLA or Stanford, kid visitors are allowed in.

We don't know how long they will be there. And what expenses they will have. Thankfully there is McDonald house, so we will pray they have availability. Monies will be for flights and stay while in California area. Either UCLA or Stanford is where Grace will be going. please share Grace story.

Mahalo