Support Ellie’s Tracheostomy Journey

Hello,

My name is Katherine (Katie) and my daughter Elise (Ellie) was born in January and was diagnosed with a very rare genetic disorder called RyR-1 related Congenital Myopathy. We did not know of this disorder before she was born. She spent 27 days in the NICU and went home with only a G tube for feeding at first but became sick in April with a common cold and was life flighted to Doernbecher Childrens hospital in Portland and they realized she was in acute respiratory failure because of the weakness from the myopathy and she now requires a bi pap machine and has to wear a mask for all but 7 hours broken up throughout the day. She spent 2 months in the hospital getting stable enough to go home and we have been able to spend 4 wonderful months not in the hospital. Our hope was to wean her to only having to wear the mask and need the support while she sleeps but she has been unable to do so and will require a tracheostomy.

She is scheduled for surgery on November 22nd, 2024 and my hope is to raise enough money so that my husband ( her Dad) can take the day of surgery and a couple days after off to be with us and we will not have to worry financially. He is the sole provider as I am unable to work due to Ellie's diagnosis and the constant care she requires. We moved from Roseburg, Oregon to Portland for Ellie's care as she has to be near Doernbecher and it is just us here and I can't imagine going into this without him there. Our daughter needs us both and I really need him in this time. We are already struggling being a 1 income household and taking any days off will be to hard on us without some sort of help. Any extra funds will be going towards the purchase of a wonderfold type wagon to transport Ellie and all of her equipment in safely until we are able to get her an adaptive wheelchair thru insurance.

Ellie is only 10 months old and she has been thru so much already but she remains happy, resilient and joyful and she has come so far since birth. We are hopeful that getting this tracheostomy will improve her quality of life and make her happier.

So if you are in a position to donate it would be so very appreciated and if not just sharing this would mean the absolute most to our family in this very hard time.

Thank you,

Katie ❤️