Hailey had a great weekend! I don’t know who invented trunk or treating but they deserve a high five from every mom that has a medically fragile, disabled, or special needs child. On Halloween Hailey can not go up to houses and ring the bell like a typical child. Nearly every house (in our neighborhood especially) have steps and Hailey is either using her walker or her wheelchair. It’s not easy. Also there aren’t too many events for kids like Hailey. She can’t handle strobing or flashing lights, she can’t climb up big bouncy slides, and maneuvering through chaos and crowds is very uncomfortable.
We’re so thankful that Hailey has friends in the community that sees this and invites her to be a part of their fun. Thank you to Ronald McDonald House Las Vegas and the RED Shoe Society for letting Hailey join your trunk or treat. She loved decorating our car and passing out HANDFULS of candy and then going around in her walker as well. It was a fun night for us as a family and we really appreciate it!
Thank you to Ferell, Julie, Ashley, Buffy and everyone else who put together and participated in such a great event. ❤️ 👻 🎃 🍭
Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her. Each necklace signifies a Hug for Hailey.
Tuesday, October 29, 2019
Friday, October 18, 2019
New Items in our Etsy shop
While we are already preparing for our famous ornaments we have also added a few new items to Hailey's Etsy shop. One of those things is recycled books turned into journals, or autograph books or even sketch books!
Check them out at HERE
Bathtub safety rails
Through Amazon we were able to order some portable handrails for the bathtub for Hailey! It has made a world of difference. This is an example of something I would say is a medical necessity for safety reasons that insurance does not pay for that we have to pay for out of pocket. Thank you to those of you who send us Amazon gift cards to help with this cost.
For some fun surprises or for gift cards Hailey has an Amazon wish list here: http://amzn.com/w/MYVW5QFJV9ZL
A week ago I received this message from our local Ronald McDonald House Charities of Greater Las Vegas:
We nominated Hailey for Summerlin Macaroni Kid’s Kindness Super Star for 2019 during their September Kindness Month campaign. We are excited to share that she was selected!
We truly appreciate Hailey’s love for RMHC and the work she does in collecting pop tabs, decorating lunch bags, donating items to the House, and to you amazing parents for sharing her story and your RMHC experience at our Run in April. You are a wonderful family and we always love seeing Hailey’s smiling face when she comes by!
Her prize was winning a family 4 pack of tickets to that new Instagram event at Mandalay Bay called Happy Place. We took my niece and really had such a great time! Proud of my girl and her philanthropic heart. It was a great family day!