Help Hayden fight Acute Flaccid Myelitis

I am making this fundraiser for my 5-year-old niece, Hayden Ingold, whose whole life changed in a matter of hours on February 10th. She started her day by playing with neighborhood friends, but she soon came home complaining that her arms hurt so she laid down to rest. When she woke up, she called out to her parents in a panic. They rushed to her and quickly realized that Hayden could not hold up her head, move her arms, or stand up. They went to the ER and within a few hours Hayden was completely paralyzed, her lung collapsed, and she was intubated. After a week in the Pediatric Intensive Care Unit at OSF it was determined that she needed more specialized care so she was transported by life-flight to Lurie Children’s Hospital PICU in Chicago. She now has a tracheostomy, a feeding tube, and is receiving medical treatment for a very rare condition called Acute Flaccid Myelitis. AFM is a neurological syndrome that occurs likely from the enterovirus (which normally causes cold-like symptoms) damaging the cells in the spinal cord that control muscle movement.There are less than 700 reported cases of AFM, and it is a disease the medical world does not know much about. Once Hayden is stable enough to leave the Pediatric Intensive Care Unit, she will begin months of inpatient physical therapy at the Shirley Ryan Ability Lab in Chicago working hard to regain any possible movement. While she is in the right place for the best outcome, being in Chicago is hard on all of them. Leaving Cohen, their 7-year-old, home in the care of extended family has been very difficult. The girls are not only sisters, but best friends and they all can't wait until they are together again. 

Hayden’s recovery is unknown, but her spirit is strong, and so is her support system. Many of you have reached out asking about what you can do to help; and now that their medical bills are starting to roll in, I thought this would be one way we could all contribute to make a big impact. They are looking at countless medical bills, therapy bills, transport costs, possible adaptations to their home so it is accessible for Hayden, assistive devices, and more. Any amount you can give will make such a difference for the Ingold family. Relieving some of the financial stress will help them focus on Hayden’s recovery and the joyful day when she can come home and they can be reunited as a family of four again. If you are unable to donate, please say a prayer for Hayden’s recovery, for the medical staff caring for Hayden, and for the Ingold family as they adapt to their new normal.

Thank you so much!

Read more about AFM here

03/13/24

The muscles around Hayden’s lungs are continuing to get stronger! She has been breathing on her own during the day, and using the breathing machine at night. She is working on swallowing and gaining strength to cough. She is also practicing using her speech valve as well. It’s been so great to finally hear her voice! 

Her mobility on her right side has shown great improvement! She can touch her nose with her right hand and bend right leg at a 90 degree angle. Her left side has not shown as much improvement, but with therapy we are hopeful it will catch up. 

Hayden has been enjoying taking adventures around the hospital with her sister Cohen on the weekends. They’ve gone to the indoor garden, the music and art room, and played dolls in the playroom. AFM has not impacted Hayden’s brain so it has been fun to see her personality and sense of humor come back, as well as her enjoyment and happiness for life. 

Hayden is getting discharged from Lurie TODAY and will begin inpatient rehabilitation at Shirley Ryan. There she will spend all of her time working on getting stronger and re-teaching her body through occupational therapy, physical therapy, respiratory therapy, and speech therapy. It’s projected that she will be at Shirley Ryan for a couple of months before transitioning home to begin out-patient rehabilitation. Once home, Hayden will require in home nursing care. If you are an interested pediatric nurse, please reach out to a family member. 

I also wanted to express our immense gratitude to each and every one of you for donating, praying, sending cards and gifts, making meals, and spreading the word about Hayden. It’s amazing to see how this community has come together to support the Ingold family, and it means the world to them and those that love them. Thank you, thank you, thank you

03/21/24

Hayden is working hard in all her therapy and making a lot of progress! Her left arm is starting to improve more and Monday was the first time she was able to pinch and grab an object. Her lungs continue to get stronger as well! Hayden has gotten a lot better at speaking with her trach. She has been able to facetime with cousins and friends! Jc, Lyndsie and Cohen have been spending long weekends together with Hayden in Chicago. Hayden and Cohen love to be together and I think it helps keep everyone's spirits up! 

Hayden is doing 1 hour of physical, occupational, and speech therapy 6 days a week!! She is working hard to gain back her strength and mobility. Her left arm has started to gain more mobility this past week. Today she had a cast placed on her left foot. This will help it stay in the proper position until it starts to gain back more control. Hayden has been starting to eat more food. Jc mentioned it is not her favorite as she is gaining back her swallowing. But I saw pictures of her happy and eating a popsicle for breakfast.. it may be a little selective ;) Hayden's lungs continue to get stronger. She has more tests coming up to evaluate her improvement. Hopefully she passes and can get off the vent before coming home!

04/01/24

Hayden has been working hard in all of her therapies and it shows through all of her progress! She has 3-4 hours of physical therapy, occupational and speech therapy daily. 

In physical therapy she has been working on using her wheelchair independently, assisted walking with a walker, and riding an assistive bike. She says the wheelchair is the most fun, and she walked 110 ft with her walker while bearing her own weight and with the help of braces. She just needed the therapist to help with her mobility on her left side. 

In occupational therapy she is working on head, neck and trunk control and strengthening the fine motor movement in her left arm. 

 In speech therapy she has been working on swallowing and strengthening her breathing muscles so she can get her trach out! She is following a progressive capping protocol, where her trach is completely occluded for 10 hours each day and she breathes in and out through her mouth/nose! If she continues to progress, her team is optimistic she can breathe without the trach. The breathing vent is officially out of her room (HUGE DEAL)! She also passed her swallow study and has advanced to a normal diet. She is continuing to get tube feeds until she’s eating and drinking enough on her own. So far on Hayden’s menu is as follows: chicken nuggets, Doritos, pancakes, and marshmallows. 

 Cohen has been on spring break and the Ingold family has been able to all be together for this past week, as well as have visitors to celebrate Easter. Jc and Lyndsie were also able to both leave the hospital for the first time together after 8 weeks of taking turns thanks to another family member offering to stay at Hayden’s bedside. They went to quick dinner and were finally able to process this together and enjoy one another’s company in a more stress free environment. 

The CDC officially diagnosed Hayden with acute flaccid myelitis, otherwise known as AFM. Hayden is the second official case in the nation for 2024. 

 Hayden’s tentative release date from Shirley Ryan is early May. If she has made this much progress in the last 3 weeks, who knows how much progress she will make in the next month before coming home!