Thursday, August 6, 2015

Thank you to the Little Miss Hannah Foundation

Earlier this year while we attending the Walk for Wishes event I walked around the booths that were there. One booth I came across was for the Little Miss Hannah Foundation. LMHF is a Las Vegas based, Family run non-profit organization that Hannah's Parents started in her memory. I spoke with Carrie, who is Hannah's mom and while discussing rare diseases Hailey's name came up. As you all know Hailey too, has a rare disease. Leukodystrophy is a rare disease since it only affects a small percent of the population. Carrie told me about her daughter and the foundation they started because of her.

The Little Miss Hannah Foundation provides grants and other financial support to offset costs of equipment and related costs to enhance the quality of life of medically fragile and special-needs children and their families throughout Southern Nevada. This was amazing news! I am so glad that there are programs, and grants that help families like ours when it is very hard and overwhelming to have to do this on your own, with no one to point you in the direction that you need. We were needing to get Hailey a new push chair/portable wheelchair and our insurance was not going to approve it since we have a wheelchair that Hailey uses to be transported to and from school and when she is ataxic. I had no idea how we were going to come up with over $1600 for the chair Hailey needed.

Shopping around on eBay we found the chair we would want to purchase for Hailey at a 1/4 of the price and we wanted to get it. We also had to purchase a headrest separately as well. I had filled out a grant application from Little Miss Hannah Foundation and we were thrilled to hear that we were approved for our grant and Hailey would get her chair she needed.

Hailey's dad assembling the new chair! 

 This chair is different from her regular wheelchair in SO many ways! First, it's NOT 70 pounds, it can fold up, and I can lift it in and out of the van without hurting myself. We would be able to take this chair with us during our trips to Disneyland where we could use it with ease! We use this chair all the time! Quick trips to the supermarket, going to the mall, running errands when Hailey needs to sit and rest or when she isn't feeling well, are all things we can do with this new chair thanks to Little Miss Hannah Foundation. Being able to have Hailey enjoy a better quality of life is our top priority.

Hailey's Trip to Disneyland this year! 

A trip to the mall and then to the movies to see Inside Out! 

 LMHF does more then just medical and therapy equipment grants, they also assemble care packages for parents in the PICU, they are advocates for rare diseases, and they provide family support. Last month on July 25th, which is Hannah's Birthday, there is a celebration that allows children, with rare diseases, along with their families to attend a festival. Hailey was invited to be able to participate in all the actives free of charge for being a part of the Little Miss Hannah Family. Hailey had such a great time and I loved seeing her have SO much fun.

Del Sol Cheerleaders being so sweet with Hailey!

Party Ever After Las Vegas was also there and they brought all the Princesses! 

Fun in the photo booth with Hailey and her cousins from Arizona. 

 We'd like to thank Carrie and the Little Miss Hannah Foundation for doing something so great for other families that are dealing with what they have experienced. I invite you to take a look at the Little Miss Hannah Foundation website and familiarize yourself with their services so that if you or someone you know ever needs assistance in Southern Nevada they will have somewhere to be able to go.

Thank you Little Miss Hannah!!

Sunday, June 14, 2015

Hailey has a YouTube Channel

Did you know that Hailey has a YouTube channel where you can see different parts of what Leukodystrophy has done to her? Lots are old videos from the beginning of the disease, but there are videos of recent fun things also! Search Hugs for Hailey on YouTube and take a look!

Wednesday, May 20, 2015

We have Hugs for Hailey shirts available for purchase!!!!

This summer we want to go to the Hunter's Hope Family Symposium again! We had such an amazing experience and met such wonderful people that we are so excited to go again. You can read about our experience last year HERE. We were doing so great saving money for this trip until Hailey had her pacemaker surgery in Utah. Just when I thought we were taking one step forward all of the sudden we were two steps back.

We decided to do a booster fundraiser to help pay for our travel expenses to be able to attend. We added T-shirts, tank tops, and hoodies!! This booster only lasts for 2 weeks and there is a minimum purchase to be able to even print for us. Good news for all of our supporters out of the country, we have international shipping!!! People have been asking about Hailey shirts and now they are available in all sizes!

If you would like to purchase any of these super cute items you can follow this link. If you would like to make a donation there is a link for that as well on our page. Even if you are not able to make a purchase please share the information. We would really appreciate it!

Thursday, May 14, 2015

Hailey's Shopkins 7th Birthday Party

Sweet Hailey it's your 7th Birthday!!! Let's Celebrate! 

When I asked Hailey what kind of birthday party she wanted she knew right away...Shopkins!! What are Shopkins?? You can click here for the Shopkins Website. 

Shopkins decorations that you can buy at the party store don't exist! So it was up to me to get crafty! 

There are no Shopkins clothing items available so I made an iron on for Hailey and it was pretty perfect, and it was pink! 

I was able to find Donut shaped balloons on Amazon and made a donut Shopkin. Hailey was very impressed! *So was I !!*

 An easy, fun decoration was Shopkins Crazy Straws! Easy! 

Through the Icing Smiles Organization we were given a cake that was made by Ms. Renee who we call a Sugar Angel. She made the cake and decorated it just for Hailey. 

More easy and fun decorations were some M&Ms in tube containers with Shopkins stickers (that I printed) Hailey loved the fun, bright colors! 
 I think the main decorations were the Shopkins Blind Baskets that were EXTREMELY HARD to find! I actually had to pick these up at a Target that was 191 miles away from our HOUSE! When Hailey saw this it was like she won the lottery! Such a happy girl!  

Shopkins manufacturer is Moose Toys. Another item from Moose Toys are BEADOS. These were set up as the craft activity for the kids and I've never had the house so quiet! Concentration was a must!
This is a great fun for Hailey who goes to Occupational Therapy. Lots of hand eye coordination and anything that helps Hailey's brain communication with her body is a plus! This was a perfect activity! 

More home made decorations. Balloons and stickers. Perfect! 

I even made a Shopkins cupcake stand with the help of some printables off the Shopkins website. This was a HUGE hit. Some even had Shopkins on top and those were picked first...Whoda guessed? *Wink*

Tablescapes are SO much fun and so easy to do. Here are a few decorations I put together: 

I had the happiest 7 year old! Just look at her after she blew out her candle! 

After cake and ice cream it was time to open some blind baskets! 

Such an exciting moment! Especially when you get an Ultra Rare! 

The day wasn't ALL Shopkins. Hailey is really into Tsum Tsums which are just as hard to find but thanks to great family Hailey got one as a gift! 

After Hailey's party we took the family out to dinner. Such a happy girl with her GREAT Grandparents! 
 Hailey with her Grandparents! 

It's really hard to find shoes for Hailey since she wears AFO's (Ankle Foot Orthotics) and she really loved her Peach's Neet Feet Shoes. I was inspired to give this challenge my best try. One day when/if I ever get to the point where I'm good enough I really want to paint a pair of shoes for Peach's Neet Feet.  These are the Shopkins Shoes I painted by hand for Hailey for her birthday. She loved them! 

Instead of gifts and birthday presents for Hailey we wanted people to help us donate to our local Ronald McDonald House. We collected so much stuff! Lots of toiletries and lots of toys. We spent time at the Ronald McDonald House in Salt Lake when Hailey had her Pacemaker surgery in January and we know they could really use the help and we were happy to be able to do this. 

Happy Birthday Hailey! We love you TONS and TONS and we hope you had so much fun and that you enjoyed your day. We know how happy you are to be turning 7 and we are even happier. You are the most amazing daughter and you give the best hugs!

Wednesday, May 13, 2015

Hailey's Birthday Trip to Disneyland 2015

Taking Hailey to Disneyland is always amazing family fun! She is so happy the whole entire time. It's a magical place for her and we love that we were able to take her for her 7th birthday. The first thing we did...Disney Jr. Live!!! Last year we went to this show 5 times. It really is one of her favorite shows to see. One of the cast members, Chris, treated Hailey like a VIP and let her pick where she wanted to sit. She was excited to say the least! Look at the smile!

Meeting characters is on the to do list. I love how this is so real to Hailey. Getting autographs and photos are such a fun thing for her to do! (I just wish the lines where shorter!) 

There is a new Frozen Sing a Long show at Disneyland California, and we saw this show MULTIPLE times as well!! It was also a lot of fun and the singing was Hailey's favorite part! 

Over at Disneyland there is another Frozen show and this was another MUST on Hailey's list. She hears the music and immediately starts singing! Again all the cast members were amazing with Hailey.

It seems to be a tradition now to have lunch with the Princesses and it's always fun for Hailey to get to Hug royalty. 

Another fun surprise we had for Hailey was that there were a few families that we originally met at the Hunter's Hope Foundation Symposium that we were able to meet up with! We always have so much fun with our Leukodystrophy family. Hailey had lots of Hugs and Kisses for everyone!

We even went on a few rides with everyone! 

Then we all had dinner together! I can't wait to hopefully see everyone this year at the symposium!!

Hailey was very excited when she was able to see Olaf from Frozen! Hailey even wore her Olaf socks with her AFOs. He pointed them out and we told Olaf that Hailey loves hugs too! 

 Anna & Elsa!! They were both great to Hailey and made sure to spend some time talking with Hailey and gave her lots of Hugs! This was so special. Hailey LOVES Frozen...still! 

Hailey had seen some YouTube videos of Disneyland and was determined to go on Dumbo. I didn't think it was a very good idea but Hailey wanted to and so we did. After, she said that she did NOT like Dumbo. I had that song from Tangled pop into my head, "Mother Knows Best." HA! 

It's a Small World was the ride that Hailey would choose 100 times if we let her. She smiled, sang, and pointed at all the dolls saying, "look at that!" 

We've never met Sofia the First before so this was really fun for Hailey! 

While pushing Hailey in her wheelchair we'd end up walking through bubbles that kids where blowing with bubble guns. Hailey laughed and smiled and really wanted one of her own. She got one and she had so much fun with it. Walking through Disneyland through bubbles is 10 times more fun! There is also a really cute video of Hailey on her Facebook and Instagram page of the bubble adventure! 

Hailey was given a button that let others know that it was her birthday and boy did she LOVE the attention! She showed EVERYONE! 

It was another great trip with our birthday girl. Disneyland, Our Hunter's Hope Families, Hugs, and smiles. I love seeing this smile on my daughters face! After the pacemaker surgery she really needed some fun and time away from Doctors and therapies, and school. 

We want to thank the families that gave us this opportunity to do this for Hailey. It was amazing and we appreciate it beyond just saying thank you! 

Thursday, April 23, 2015

NHRA Weekend with the Make a Wish Family

I posted about this on our Facebook page, but I think it deserves a blog post. We were given tickets to attend the NHRA races through Make a Wish and Hailey is always up for a new adventure so we had a day at the races. There was a Make a Wish car that is driven by Tommy Johnson Jr. and we had a special meet and greet with him. 

 Hailey and him got to chatting about her upcoming birthday and what her Make a Wish was. They became quick friends and of course he got a good luck hug from Hailey.

While we walked around so many people smiled at Hailey and pushed her up to the front of the lines for autographs. We were on the look out for as Hailey said, "Girl Drivers!" She was very excited to meet Courtney Force and family. What is even more awesome then meeting Courtney is that her race car is PINK!!!

We met Courtneys dad, John Force.

John's other daughter Brittany Force races too!

We met The Sarge!

 We met Steve Torrence and he invited us inside to meet his WHOLE crew. They were all so wonderful to Hailey and even posted a photo of her on their Facebook Page! 

This is Ms. Terry! The wonderful lady responsible for the Make a Wish car! She was very very sweet with Hailey and you could see how much she loves what she does and we really appreciated her kindness and hospitality! 

 Tim Wilkerson was another driver we met that was wonderful with Hailey! 

Someone that Hailey became a big fan of was Antron Brown. He had a Q & A in the Matco Tools tent that adjoined the Make a Wish tent. At the end he asked if there were anymore questions and Hailey raised her hand so high. He asked her what the question was and she wanted to give him a hug. 

Antron was so sweet with her and asked her all kinds of questions that Hailey loved answering. He asked how old she was and she said, "6 but ALMOST 7!" He said that since it was almost her birthday he had some presents for her! 

It was ADORABLE!! 

All decked out in Antron Brown gear! So awesome !
 I think meeting Antron was a huge highlight for Hailey! 

We also met a couple more "Girl Drivers!" 
Alexia Dejoria
 Ashley Stanford! Ashley was super nice and even follows us on Instagram! 
 Ashley wanted Hailey to have an Ashley Sanford shirt that has Pink letters! 

We had never been to the NHRA races before and it was so much fun that I hope we get to go again! So many people we met were so great especially the team members from the DSR crew! Especially Rich and Jeff who took SUCH great care of us!!

Thank you to everyone involved with having us attend!