How it Started

First and foremost, we are incredibly grateful for the support that has come Gia’s way. Whether you’ve given words of encouragement, a quick check in, prayer, or a donation, we’ve felt the incredible outpour of love for her— from the bottom of our hearts, thank you.

Kevin and I have spent months waiting and praying for answers, and hoping that we were finally reaching the end of Gia’s medical needs that we’ve been navigating since November.

After a seemingly straightforward tonsillectomy on June 9th, Gia was not recovering as you would expect and Kevin took her into emergency. Turns out she was in a respiratory crisis and in need of immediate ventilation support. She’s been intubated and in the ICU since the 17th, where Gia has not only been battling respiratory failure, but also a slew of other issues across all the major systems in her body. We were transferred to UCSF on the 25th where Gia has continued to fight for her life every day, while her new medical team has tried to get to the bottom of her illness.

Yesterday, Kevin and I finally received a clinical diagnosis, but it is not something you would ever want to face, or what we ever expected to receive. She has ROHHAD, an ultra-rare (only ~200 confirmed cases worldwide) autoimmune disorder where your body attacks itself and causes every major system in your body to malfunction. There are treatments to help with symptoms, but there is no cure. ROHHAD is progressive and life limiting, and will have profound impacts on Gia and our future as a family.

We have experienced an incredible amount of ups and downs the last few weeks, sometimes multiple times in one day, and with big swings of emotions— fear, confusion, shock, anger, defeat, and hope. We are currently preparing for a 2nd attempt at extubation on Sunday, and the outcome will dictate a lot about both the near and far future. We have a really difficult road ahead and we’ll have to make many hard decisions, but for now, we are focused on how we can get Gia through this hospitalization and home safely. More than anything, we can’t wait to hear her laugh again, see her get back to her joyful and silly self, and give her every opportunity to live the exceptional life she so deserves.

Our girl is strong, she is brave, and she is one hell of a fighter, but she needs your prayers, thoughts of hope, and whatever positivity you have to give. So, when you have a few moments of stillness in your day, I ask that you please think of Gia and pray for brighter days ahead.

For those interested in following her journey, we will do our best to regularly share updates as they come. We appreciate you all more than we have the words to say.

With love,
Lindsey & Kevin