26 year old new mom Kristina fought hard to find out what was wrong with her chronically ill newborn son Lucas. He was finally diagnosed with Mast Cell Activation Disorder, a disease that rendered him allergic to practically everything – including water. Lucas was being sustained by his mother’s breast milk; Kristina was on an 8-month diet of basically only eating 1 food that Lucas could tolerate. She was exhausted, malnourished, and battling her own newly activated Mast Cell Activation Disorder coupled with Ehlers-Danlos Syndrome. Then the unimaginable happened after a 3-month hospital stay in California where she and her family were seeking treatment for her son Lucas. Kristina suffered a massive brain stem stroke which resulted in her having locked in syndrome, an extremely rare secondary disorder that renders her aware and alert but unable to move, talk, eat, hold or play with her son.
That was 20 months ago. Today, Kristina, a physical therapist herself, has been able to prove many doctors wrong. Despite a grim prognosis, she breathes on her own and is making some progress in her PT. While Kristina’s health demands 24/7 care, we are so thankful that Lucas’ diagnosis has stabilized due to aggressive medical intervention. For Kristina, communication is attained by spelling the alphabet with eye blinks, where she can turn letters into words and sentences. She has begun using eye gaze software that allows her to text words and audible phrases using her eyes, a screen, and a speaker. It is a tedious process, but allows Kristina to have a voice.
January 3, 2018
New Year, new hope! Kristina made some gains in 2017 and it showed us her strength and determination to push more in 2018! We are in awe of her positive attitude and strong will to keep fighting! Kristina has become more mobile and can go on outings to PT, shopping and Church. She is eating some through her mouth and gaining more head and upper body control. Keep fighting Kristina! We love you!
Thank you all for your support and prayers!
The Daly family is so grateful for you.
October 18, 2017
October update! A few weeks ago my daughter Georganne and I visited Kristina and her family in Sarasota Florida. We spent almost a week there caring for and loving on Kristina and her family. We were so happy to be with them! Kristina is making some progress! We are so excited how much God is moving in her life. It takes a village of amazing people to care for her in the loving home of her Mom and Dad. Take a look at the new photos I added of our visit and also the new addition they are building to their home for Kristina. We so much appreciate your support to offset the cost for rehab, medicine, supplies, nurses, PT and the medical needs for Lucas. We also thank you all for your love and prayers!
Photo Galleries (2)
June 19, 2019
Praying for complete healing for you and your beautiful baby. God bless you and your lovely family❤️
August 23, 2017
Kristina, you are always in our prayers.xoxo
Gerry and John Antonini
August 23, 2017
I'm always amazed by your progress every time I see you--but really, I shouldn't be, because you're the most determined person I know! Keep up the good work!
Rebekah, Sam, and Luke
August 23, 2017
Kristina- You, your son, your husband, your family, and your medical team are in our prayers! We love you!
Diane & Nick Gradone