Hi my name is Ana, a dear friend of mine and her family are going through a hard time. There little girl has a genetic incurable, untreatable condition. This little girl let me tell you is a ray of sunshine. Always smiling, happy and wanting to find new adventures. I have been blessed to be able to join them on some of those adventures and I can’t wait for more. I want to do this fundraiser to help their family have professional photos taken, go to oilers games which Willow loves, do fun things as a family while she is still able and capable of using her walker. To make as many memories as possible throughout her journey. My amazing friend stays home with willow as she needs around the clock care while her husband is the only income earner in their home. They both have been amazing advocates throughout this journey. They are heartbroken and this news has rocked them to the core as from what they have said most kiddos with INAD pass before they are 10 years old. Please help them experience life in willows eyes. Here is a message and more information from my friend Kay.

For those who didn't want to watch the 45 minute video update I did a week ago, I'll summarize:

The results of my 4 year olds complete genetic sequencing revealed she has an incurable, untreatable degenerative condition called INAD - Infantile Neuroaxonal Dystrophy. This is a life-limiting condition where she will rapidly lose control over her body; walking, talking, swallowing, effective use of her lungs, her ability to void, ability to see and hear, memory, and awareness. The timeline of this is on average 60 months from symptom onset until this condition will cause her body to give out.

My biggest fear is not the horrors that are already beginning and in the near future, but rather that Willow will be forgotten. Forgotten for who she is now, before this condition takes away every aspect of who she is. I want pictures of her. I want memories with her. I want everyone who knows her to remember her for being a willful, energetic, feisty spitfire with a fierce love of all things Gabby's Dollhouse, kitties, butterflies, flowers, mermaids, Twirly Woos, and recent Disney princesses. I want people to make memories with her. I want her to feel overwhelming love from our people while she can.

We are not okay. Her decline is fast - faster than I can convey. We are grieving, and angry, and scared. Trexton is struggling. Our hearts are heavy.

As it turns out, my grieving style is to hide away. I've had intense moments of overwhelming grief that manifests in intense anger where I scream until my throat hurts. I break down in tears at seemingly random moments where I'm reminded of all this. Sol has been great for being the point of contact, cuz if you reach out to me, I'm not responding. Not because I don't appreciate the support, but apparently my grieving style is to withdraw, whereas Sol is the opposite. Hoping I'll be able to shake that withdrawing so I can respond to people appropriately.

Please make memories with my baby. Please take pictures. Please share your experiences with her. I don't want her to be forgotten. My baby deserves to be remembered.

We are not okay.

Please consider donating. I know it would mean so much to their family to be able to make as many memories possible. If you are unable to donate please keep them in your prayers, or if anyone is willing to drop off meals I can coordinate that as well. Anything will help as they come to terms with what the future holds .

wow our community is amazing . Thank you for everyone who continues to donate. Willows parents have made a wish list for her. Anyone is free to contact me at anytime if they want to set up meals, local donations etc. Lets make these wishes come true for their family.

Willow's Best Life Bucket List

• Family Photography session

• Ride a School Bus

• Matinee Oilers game

• All the water parks/pools

• Go on a (gentle) rollercoaster

• See a big Aquarium

• Horseback Riding? Tandem/adaptive saddle?

• Something with butterflies?

• Something with rocks/minerals?

• Something with stars?

• Visit a flower garden

• See a hippopotamus/armadillo

• Bouncy castle/house

• Meeting Elsa, Anna, Rapunzel, Moana

• Accessible Mountain cabin stay?

• Vacation somewhere warm (not USA)

• See Raffi

• Something with dancing/music. Dance party?

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