FHSR sat down with the amazing Mallory, team captain for Mal’s Pals, and her mom Jennifer Evangelides, to chat about their involvement in the the Ann & Robert H. Lurie Children’s Hospital of Chicago’s Move for Kids event. The 2024 Move for Kids at Montrose Harbor was the 12th year that Mal’s Pals participated in the event and fundraising for the Lurie Audiology Department. This year Mallory was once again the #1 Individual fundraiser for the event, raising over $26,000, and TEAM Mal’s Pals and FHSR combined to raise over $27,500.00! All of the funding will benefit the Pediatric Audiology Department at Lurie Children’s.
We sat down with Mal and her mom Jen to talk about their passion for Move for Kids, and to thank them for the amazing fundraising efforts they have done year after year. With us is Mallory’s mother, Jen who will give us some background about their involvement with the Move for Kids and why Lurie Children’s Hospital is so important to them:
This fundraising event remains incredibly important to us because of the difference Lurie continues to make in Mallory’s life and the lives of so many other children.
We are so proud and amazed by Mallory and all she has accomplished since she was first admitted to Lurie as a 10 month old. She has surpassed all our hopes and expectations, and we are overwhelmed with gratitude to have such a happy, healthy, busy, brilliant, loving, laughing and thriving twelve year old.
None of the progress Mallory has made would be possible without the vast team of doctors, nurses, specialists, audiologists, therapists, coordinators and countless experts at Lurie. We still visit Lurie on a regular basis, and many of the services Mallory currently benefits from are a result of the hospital’s partnership with The Foundation for Hearing and Speech Resources, (FHSR) an organization that is committed to improving the lives of children with hearing loss and that our family helps to support.
All donations secured through the Mal’s Pals team will directly fund the Pediatric Audiology Department programs that FHSR grants at Lurie.
You all have been huge supporters of the Lurie Children’s Hospital’s Move for Kids for years now with your team Mal’s Pals. Why did you start your team? What does this event mean to you all?
Jen: When Mal had first been admitted to Lurie, we were so grateful for the care and attention she was receiving. Not only had her medical team saved our daughter’s life, but they were continuing to put her in touch with all the experts and resources she needed in order to successfully battle through the complications of her illness and thrive. When we saw a poster for Move for the Kids on one of our many visits to Lurie, it seemed like a simple, easy and obvious way for us to give back to this institution that had done so very much for our family. That very first year, we happened to meet Carey Gelfand as we walked along the lake during the 5K, and she talked to me about her involvement with the Foundation for Hearing and Speech Rehabilitation. In the weeks and years that followed, we became more and more familiar with this organization and the many programs and resources FHSR contributes to Lurie and the audiology department. We attended several fundraising events for FHSR and eventually concentrated our Move for the Kids fundraising efforts to support all the remarkable work that FHSR does at the hospital. It has been our honor and privilege to fundraise for both Lurie and FHSR – our lives would be so very different without each of these phenomenal organizations
Jen, can you please explain how Mallory lost her hearing?
Jen: Mallory had bacterial meningitis when she was ten months old, and permanent hearing loss is a common complication for individuals who survive the infection. Mallory’s hearing loss was diagnosed by the audiology team at Lurie just one month after she was initially admitted to the hospital. She has profound loss in her right ear and moderate loss in her left ear.
Wow, that is an incredible story! Is that when you first met the Audiology team and Dr. Nancy Young at Lurie Children’s Hospital?
Jen: The network of doctors and specialists at Lurie are truly remarkable, and they work incredibly fast on behalf of their patients. As an example, Mallory’s hearing loss was diagnosed by the Audiology team at Lurie late in the afternoon of December 18th, and we received a call from Dr. Young the very first thing on the morning of December 19th. Mallory was eleven months old at the time, and on our initial call with Dr. Young, she spoke with us about the type of hearing loss Mallory had experienced and explained that she was a candidate for a cochlear implant in her right ear. She walked me through the associated risks and benefits of this possibility and put me in touch with her assistant to schedule an immediate appointment for Mallory to be seen. This began a nearly year-long journey with Dr. Young and the rest of Mallory’s medical team to determine if a cochlear implant was the right decision for her.
How did you make the decision to have Mallory implanted?
Jen: Mallory was facing several overwhelming challenges as she recovered from meningitis – she was unable to move or walk or even drink liquids on her own. Hearing loss was only one of many factors we were striving to understand and work through with her vast team of medical experts, and all of it was new and unfamiliar to us. Being a patient at Lurie made all the difference in the world, as Dr. Young was able to consult regularly with Mallory’s neurologist, immunologist, and infectious disease physician to take all important factors of her health and recovery into consideration. Dr. Young was then able to help us understand and interpret what the data and insights meant, and together we all agreed moving forward with the cochlear implant surgery was the very best option for Mallory. Nearly six years later, we couldn’t be more thrilled and grateful for the choice we made!
What was the first thing you remember about Mallory after she got her first hearing aid? Her cochlear implant? What was that experience like for her and your family?
Jen: Mallory wore two hearing aids before she had her cochlear implant surgery. She was one year old at the time and had an incredibly difficult time – which meant we all did! She frequently cried and pulled them out and scratched vigorously at her ears. It felt like we were torturing her, but with the encouragement of the audiology team, we continued to put them back in and try again and again. Eventually, she became perfectly comfortable wearing them and even had a relatively smooth transition adjusting to her cochlear implant when she was activated at nearly two years old. We were all shocked at how smooth and easy her CI surgery and recovery were – it was as if this truly remarkable procedure and technology was just no big deal at all! The weeks, months and years after surgery were also not as difficult as we had anticipated, given that the audiologists and aural habilitation therapists at Lurie truly held our hands the entire way. In fact, visiting the 4th floor at Lurie for our weekly therapy sessions and regular visits, check ups and equipment repairs was very much something we all looked forward to – and still do to this day.
How do you feel the devices have affected Mal’s life and your families? Her successful outcomes are amazing- what advice can you give to other parents out there who are in a similar situation?
Jen: It is quite difficult to summarize the impact Mallory’s hearing equipment has had on her life and our family. It has been over six years since she was first diagnosed with her hearing loss, and over six years of intensive therapies with audiology and speech therapists, equipment mishaps and adjusting to this new normal for Mallory. But candidly, everything really is just that: completely normal. At a casual glance, you would never know Mallory has overcome all that she has. But those of us who have been involved with Mallory’s recovery the last several years know first-hand that having access to speech sounds has been a critical part of her success in therapy, in school, socially and with so many other aspects of her life. She is genuinely the happiest, hardest working, most enthusiastic and loving person I know.
Mal – We are so thrilled to have you as our FHSR Student Ambassador! Thank you so much! What do you like about the Move for The Kids walk?
Mallory: I have been doing Move for the Kids for twelve years. I like that you can walk and have snacks at the end of the walk. I really like that when people donate to our team, they help us help others. Together we help everyone.
What would you like other kids out there living with hearing loss to know?
Mallory: Each year I try to think of something inspiring for others. This year my inspiration quotes were Life might be touch but so are YOU! and When things don’t go right, go left!
I also want other kids with hearing loss to know that it is actually important to put your hearing equipment in every day. And that it is something that is really special about you!
