Haylee Jade York

Joey York 36w

🪽👼🏻🩵Hay’s 6th Heaven day 🪽👼🏻🩵

celbrating legacy of Hay on Haylee’s 6th Heaven day🩵👼🏻🪽

Joey York 47w

🪽👼🏻🪽

our angel Haylee

Joey York 71w

Hays Fairyland Extravganza

‼️‼️‼️‼️‼️Attention, Attention‼️‼️‼️‼️‼️ 💜Hay’s Fairyland Extravaganza is 4 weeks away 🦓Sunday July 13 th 10:00-1:00 pm🦓 at Veterans Tribute Park shelter #1 located at 1031 Kisker Rd. Weldon Springs, 63304💜 👼🏻We are celebrating Haylee’s 4th Heavenly Bday👼🏻 this is not a day to be sad, it’s a day to celebrate an extraordinary life🌟 while also PHighting for a cure PH🦓 💙💛Appearance by Hay’s friends at SCCAD with an ambulance to explore🚑 and Louie from the St. Louis Blues 🥅🏒 💫Activities include: carnival games- everyone wins a prize😉, face painting 👩🏽‍🎨, tattoos, coloring station, balloon art and photo props🤹🏻 🕊we will have a dove release honoring Hay🕊 🎟there will be raffle baskets 👏🏻 drawling will be around 12:30, but you don’t have to be present to win. We will call winners to set up drop off time. All proceeds will go to 7Runs4Hay to benefit Team Phenomenal Hope, to help ph patients with unmet needs and help in research for a cure.💜$1 a ticket $20 an arm length ! 🧜🏼‍♀️Haylee always said there are only two rules: 1- be yourself and 2- have fun. So stop by tomorrow and have some fun! If you have Hay themed gear please wear it in her honor🥰 Blues💙💛, pineapples 🍍, unicorns 🦄, ponies 🐴, zebra stripes 🦓, mermaids 🧜🏼‍♀️, or whatever else makes you think of Hay.💜

Joey York 71w

Father’s Day with Hay

🖤🤎💛👼🏻

Joey York 89w

Haylee’s beads of courage

Finally got done straining Haylee’s beads of courage. Each bead shows a story of courage and honor. In Hay’s 4 and half year fight against PH she: Was admitted to ICU -2 times Had central lines placed/replaced- 2 times Went to clinic visits- 11 times Had dressing changes- 213 times Had echos done- 14 times Visit the ER- 8 times Was in isolation- 1 time 24 hour IV infusions for 4 1/2 years= 1,555 days Learned new meds- 6 times Had over night hospital stays- 20 times Gave blood- 60 times Had IV- 7 times Made OR trips- 7 times Had anesthesia and respiratory support-7 times Had ekg and chest X-rays- 33 times Tube/cath placed removed- 7 times Acts of courage- 66 times Cardiac surgery- 7 times Took 3 meds three times daily and had pump changes daily for 3 months then every other day= 1,520 Special accomplishments -7 Took oral doses of meds- 4,032 times Mobility challenges including lay flat time, wheelchair and stair lift- 14 Transferred units- 1 time And was discharged from hospital- 13 times She earned a total of 7,203 beads. I’m sure I missed some this was done all from memory late last year. It is astonishing to see how much she really went through in those four and half years on paper and through her beads. No child should have to endure any of these things… Haylee never lost her smile either, not even for one day. I truly don’t know how she adapted so effortlessly to all she had too, I know for certain most adults could not do it without complaint. Lesson to be taken from Hay story take what battle your given and find a way to put your own sparkle on it. That’s what she did and she shined to her very last breath. We are so very proud of you Hay you were a warrior and a true hero. 💫🌟✨

Joey York 89w

5 years 🪽💜🪽

5 years since we stood on that cold dark street corner💜 5 years without hearing her sweet little voice🪽 5 years without her infectious laugh💜 5 years without her hugs that squeezed you so tight her arms would shake🪽 5 years without seeing the smile that always made your day better 💜 5 years without her giving you the best life advice🪽 5 years without her famous birthday pranks💜 5 years without her random acts of kindness🪽 5 years without her always finding a way to make any situation better💜 5 years without our pillar of strength🪽 5 years of making memories without her💜 5 years of what if’s?🪽 5 years of should have been’s?💜 5 years without the best person ever🪽 Life keeps going, everyone keeps moving on… but for us life seems to frozen 5 years ago on that dark street corner💜 Haylee Jade York you never wanted praise, but you deserved/deserve every bit of it. Hope you know truly know how special you were, how much you impacted so many and how incredibly loved you still are and always will be 🪽💜🪽 5 years down and a lifetime to go 💔 love is the legacy of Hay 🪽💜🪽

Joey York 89w

Hay’s 5th Heaven Day 🪽💜🪽

👼🏻can’t believe it’s been 5 years without our Hay 💔🪽💜🪽

Joey York 96w

merry Christmas 💚🎄❤️🎅🏻

Santa found Hay❤️🎄🎅🏻💚 Merry Christmas Hay love you 💚🎄🎅🏻❤️

Joey York 96w

Christmas Eve at Fairyland 🎄🎅🏻❤️💚👼🏻

Merry Christmas Eve Hay ❤️💚🎄🎅🏻 this year we know Mary Busby is in heaven spoling you 👼🏻

Joey York 96w

Santa visits Fairyland 🎄🎅🏻💚❤️

Haylee’s personal Santa contunes to visit her ❤️💚🎄🎅🏻

Joey York 100w

Happy Thanksgiving Hay🧡🤎🍁🍂🦃

Stop by to see Hay and get her decorate for Thanksgiving.🦃🍂🍁🤎🧡sissy read her Happy Thanksgiving Biscuit 🐶

Joey York 119w

🕊️dove release🕊️

Releasing doves in Hays memory at Hays Fairyland Extravaganza 🕊️

Joey York 119w

💜🦄🦓Hay’s Fairyland Extravaganza 🦄🦓💜

Thank you all for coming to Hay’s Fairyland Extravaganza today! Friday would have been Haylee’s 12 th birthday. It would have been her last year before becoming a teenager. It would have been her first year in middle school. What else it would have been we will never know… Instead Friday was her 5th heavenly birthday. A couple of mornings after Hay passed her cousin Cadence had a dream where she spent the day with Hay. During their visit Haylee explained that once you get to heaven you get to pick what age you want to be… she told cadence she chose 5. This gave us chills because whenever someone would ask Haylee how old she was her response was always 5… even after turning 7 and knowing she was 7 she still always responded “ummm 5…” we knew that message had to come from Hay, a sign that we needed letting us know she was ok and still here with us. Why 5 years old was her favorite we are not sure… we all loved her at 5 but loved her just as much at 1,2,3,4,6 and 7. At each age she was that unique soul that made her so extraordinary… the most selfless kind caring person that couldn’t stand for anyone to be sad so she would always find a way to make anyone who needed it smile… sometimes it would be by giving you something she knew you liked, it could be letting you have your pick of place to eat even if she may not like to eat there, and sometimes it could come with a cute ornery comment that you couldn’t help but laugh at. I hope each of you takes Hay’s lessons with you always… She showed us all that even given the toughest, most unfair cards in life it is possible to embrace it, adapt to it and find a way to love living life all while having a kind heart.

Joey York 119w

🪽Hay’s 5th Heavenly Bday🪽

Hays bday cake 🎂🦀

Joey York 119w

🪽Haylee’s 5th Heavenly Bday🪽

🦄🩵🪽Celbrating Haylee’s 5th Heavenly bday at Hay’s Fairyland 🦄🪽🩵

Joey York 141w

Hay’s Heaven Day

Hay’s Heaven Day We woke up early that morning around 6 am, so we could make it to St. Louis Childrens by 8:00 am Haylee’s heart cath check in time. After getting myself ready I woke up the girls. Hay was groggy, as usual she never slept well, thus not making her a morning person. Joe loaded the van with the numerous bags we brought-medication bag, activity bag, and the just in case overnight bag. One stop to pick up Grandma on the way. Drove the 30 minutes downtown to what was by now an all to familiar place. The day we had already lived 4 times before. A place Hay felt safe, where her friends worked and a place she called “her hospital.” After parking and unloading all the things we headed in and of coarse stop for the must have photo, it was snapped at 7:30 am. We walked down the hall, to the elevator and made our way to surgery regerstation. As normal Hay watched all the fish swimming in the tank nearby as we got her checked in for the day. Up to the 7 th floor the Heart center. A photo shaped at 8:02 am shows Haylee in her bed working on her activity book she got to use this day and was so excited to do, also showing her photo of all the angels she knew would be with her that day. The wait would getting increasingly longer and longer as emergent cases came up, pushing Hays' time back, not an unusual occurrence. Most kids probably would be very cranky by time 10:00 rolled around after not eating or drinking since midnight. Not Hay though some days she may only eat a handful of Hershey kisses and be good to go. Those few hours she spent finishing her activity book, doing a Facebook live, FaceTime Grandpa, watch shows on her phone, and of coarse made us laugh. I took her to the bathroom we’re she teased me about not wiping her butt, I said “women your about to have surgery you better wipe that butt. '' that ornery giggle was the best sound. On the way back to her room she pretended to make a run for it, I wish we could have ran away from this… many heads popped in to say Hi. The anesthesiologist and Haylee shared photos and stories of their pets who were in heaven. Her ph team PHriends came in and they talked about her new cat Banana. She saw her camp friend which asked her “if she was married yet ?” As she had gushed about her upcoming date with her bf with her the week before. Even her favorite doctor and one of her favorite people stop in before she went back , which the norm was a stop in after she was out , it was during their chat she told him he looked like an axe murder with his new beard, lol At 10:56 am she was getting ready to head to the OR, and I captured what is now a heart wrenching photo of her Dada hanging on to her. This trip she requested he carry her down to the OR. As the brave soul she was without any medication to ease the fear once they got to the OR doors she beverly walked through them alone. By 1:54 pm she was back in her room blown by oxygen, anyone that knows Hay knows how much she hated wearing oxygen sadly she didn’t know what it was like to simply breathe normally.Her first words to me were “Disney store?” By 4:32 her flat time was up and she was sitting up smiling. Getting ready to be Discharged.we had already learned the news we dreaded hearing every time her numbers had not improved. In the next coming weeks we had some tough decisions we thought would need to be made about her treatment going forward as it was clear the meditations were never going to help her despite her team and us giving it all we had. That day she bravely ripped off her own stickers and IV bandages something she had in the past and with no tears . At 5:01 pm I captured a photo of her leaving the hospital. Our next stop was as promised the Disney store to pick out her prize for being so brave. She picked out a Moana doll and before I even got done paying her and her Dada were outside the store opening it up. At 5:41 I snapped our last ever picture of Haylee outside the store with her doll. Next stop per her request for McDonalds for one of her favorite chicken nuggets and fries. We paid at 6:11 pm then off to Grandma and Grandpas to eat. Once there she did something she hadn’t in months, Because sauces grossed her out so much, she sat next to Grandpa and ate. After we said our goodbyes to go home after a long day. We would make it to the end of their subdivision when I heard Jordayn say to Hay” Haylee what’s wrong are you ok?” Joe would look back and immediately yell”no she’s not!” At 7:00 on he would place the 911 call that would change our lives. Haylee’s last words were “I want to see me cat.” And “I’m ok” even as she was dying she was trying to comfort us. Horror would follow. Jordyan called my Mom who rushed up the street, people stopped their cars and came out of their houses. Minutes later the first firefighters arrived on scene. Joe ran Haylee to them and handed her over. I then saw the firefighter lay her on the ground and start pumping on her chest in that movement I somehow knew my baby was gone. They told my Mom they only had a faint heartbeat and they rushed her to Barnes Jewish progress west the closest hospital. We would be meant with family, friends, and so many who loved Haylee there. Joe and I rode in the back of a police car and upon arriving I told him “I can’t go in there, I can’t have them tell me she’s gone.” It was only with the familiar faces of some paramedics Hay called her friends I was able to enter that room that night. I touched her feet and told her I was so sorry this happened to her. My Dad would later tell me of the young man that did chest compressions on her the whole time not wanting to switch out or give up. Joe would see one of the fire fighters in the back of his fire truck in tears outside. The medical staff would be on the phone with the cardiology team at Childerens getting information on some last combination of medications they could try to reverse it. After vigorously working on her giving it everything they had and more after 1 and half hours the doctor came in to tell us she thought it was time to stop. At 8:30 pm on February 11 Haylee Jade York was pronounced dead. She was 7 years 6 months and 30 days old. Since that day we have only survived through the love left by the lost beautiful soul inside and out we have all ever known. 💜💔👼🏻

Joey York 143w

💫January Hay’s Fairyland Theme 🌟

This months theme one of Haylee’s favorite places Chuckie Cheese 🐭🍕🥇🏅🎖️🎟️✨🌟⭐️💫

Joey York 143w

Haylee and Reavo

9 years ago today Haylee meant Ryan Reaves for the first time. They gave him a picture that said I love you on it and he said “awww I love you too.” He became her favorite player that day and no one ever replaced him. She called him her BFF. Never imagined we would all get to have lunch with him one day. Some people just touch your life in a forever way and he is one of them. Some of our favorite Hay memories involve him and we will forever be thankful for him giving us those. 🏒🥅👊🏻💙💛 the York’s love and always stand behind Reavo

Joey York 148w

A wish kid

Haylee was a wish kid and had an amazing wish trip to Disney world