We’ve been told to make memories, because that’s all we have left

I never imagined I would be writing something like this because

When your child is this sick , you hope someone, somewhere might have an answer. Her doctors have searched everywhere — even reaching out to specialists in other countries worldwide desperate to find a way to help But there is nothing left. No cure. No next surgery. Nothing.

Her heart could stop beating without warning, and I don’t know if we’ll get another tomorrow. It’s a pain that never leaves me — but all I want is to hold Sienna close and make memories as a family.

The strain on siennas heart and organs is increasing and her risk of sudden death is rising her body can not take this forever it may be 2 weeks it may be 2 months it may be 2 years all we know we have now reached a point where all I have left is hope.

She is our only daughter our everything

She doesn’t walk or talk, but she smiles when she’s happy and laughs in her own way. She doesn’t know how fragile she is and that makes this even harder.

Sienna was born with a half a heart From the very beginning, her life has been filled with hospitals, surgeries, tubes, medications, and constant fear.

She has already been through so much open heart surgery, brain and spinal surgeries, seizures, kidney disease, tube feeding, and loss of mobility. She uses a wheelchair, yet still finds ways to move herself around.

If you can donate, share, or even just think of Sienna, it means more than words can express. Thank you for seeing her, and thank you for helping us love her for as long as we’re lucky enough to have her

half a heart , twice the fight ❤️