Two Similar Superheroes
By Erin Kramer
Good afternoon, my name is Erin Kramer and I have the privilege of being your guest speaker today. I want to welcome you and thank you for being here with us.
A favorite phrase in my house is…“Sometimes real superheroes live in the hearts of small children fighting big battles.” Today, we get to remember a special superhero named June and I get to introduce you to another superhero named Gwen. To date, my greatest gift in life is being Gwendolyn’s mom.
Gwendolyn was born September 23, 2014 and was simply perfect …a darling baby girl with big brown eyes, long eye lashes, and a button nose. A couple weeks following her birth, she started to demonstrate abnormal long periods of crying and screaming. After multiple trials of medications, appointments with different specialists, and rounds of testing; Gwen was diagnosed with a neurological condition at 5 months of age. Shortly following, she was diagnosed with a severe form of epilepsy. To make a long story short, the last 3 years of our life have been filled with hospital admissions, countless specialists, therapy appointments, and many sleepless nights.
A little over a year ago, February 2017, we were at a regularly scheduled neurology appointment with Dr. Thio. Following his examination of Gwen, we began to discuss her care and overall needs. He said, “Is there anything you feel like you need at this time that you don’t have?” Insert Erin stepping on soapbox! We were recently dealing with the frustrations of insurance denials. We had been denied the coverage on her custom wheelchair which is a piece of equipment that runs somewhere between $5-10 thousand dollars. We were in the midst of needing to order her a custom carseat due to her inability to support her head/neck; again this is a piece of equipment that runs at least 10x the price of a high end carseat at a baby store. And finally, we had been begging insurance for coverage for night nursing due to Gwendolyn needing constant care throughout the night. All these items were denied by insurance. My husband and I both have good jobs and we pay a higher monthly rate to ensure we have the top-tier insurance coverage on our family to assist with all of Gwen’s care and needs….these denials felt unfair. Dr. Thio said, “I previously had a very similar conversation with another family about these same issues. Sadly their child has passed away, but in her honor, we are currently finalizing the details to create a memorial grant. They are looking to assist children like Gwen. Would you mind if I submitted her name to the grant?” That was the easiest question we’ve had to answer in a long time.
Approximately 1-2 weeks later, I received a phone call from the neurology social worker at St. Louis Children’s Hospital. She said, “I have good news for you! Gwen was selected as the first recipient of the grant Dr. Thio was discussing with you.” She said I’ll send you some information in the mail to further explain the details. After receiving further details of the grant and the Jessee Family, we reached out to thank them and introduce our daughter, Gwen. I would like to read some of our original thank you letter to the Jessee Family, this is dated 2/28/17.
To the Jessee Family, When words don’t seem adequate enough to say “thank you”…We received word last week that our daughter Gwen was chosen as the First Recipient of the June Jessee Memorial Foundation grant. Today in the mail we received a brochure about your foundation and the link to your Facebook page. We have spent the last hour or so reading through your page and our faces are tear stained…we have tears for the loss of June, tears for the pain as we know that sadly that will too be our reality someday, tears about the similarities between June and Gwen, and then also happy tears seeing June’s adorable photos…her smile could light up a room! Most importantly, we want to say “thank you.” Thank you for funneling your grief into strength to help other families. Thank you for helping OUR family. We are still finalizing details but plan to use the grant money toward night nursing hours or purchasing a custom car seat. We truly appreciate your generosity and wanted to reach out to say THANK YOU! We are so honored that Gwen gets to be the first child to continue on June’s legacy.
Much Love: Mark, Erin, & Gwen Kramer
Genny responded a couple days later, here is a portion of her response: Thank you so much for reaching out to us letting us know you are the first family to receive the June Jessee grant. I have been thinking of you so much without knowing yet who you are. While I am so sad about the circumstances for Gwen and your family, I hope the grant will offer you some peace of mind. I can’t tell you how healing it is to meet you via Facebook, so thank you for reaching out to us. We wanted June’s life and death to have some meaning which is why we created the June Jessee Memorial Foundation and reading your message shows us that it did and she will continue to live on by helping other families with sweet angels like your sweet Gwen. I imagine June watching over Gwen, Mark, and you while you walk this scary and unfamiliar path. Love, Genny
These first two communications a little over a year ago were the start of a beautiful friendship. As communication continued, we learned all the similarities between our two families. Some of these communications gave me chills:
- My husband, Mark, attended St. Clement parish growing up- the same church that Matt and Genny attended
- Even more so, my BIL, Matt Kramer, was a classmate of Matt Jessee at St. Clement Parish School
- Following that realization, Genny said her MIL had told her about another little girl in the parish that had a similar condition to June- this whole time they were talking about Gwen
- June and Gwen are both first born children
- June and Gwen are both named after their grandmothers
- Both were healthy pregnancies that led to a diagnosis sometime after birth
- Like June, Gwen has a progressive neurological condition
- Both girls are medical mysteries and their conditions remain undiagnosed
- They share a similar medical team…including neurologist, home health nurses
In fact, last year…we had one of Gwen’s regular nurses come over so I could attend another luncheon. This luncheon would be the first time I would really meet Genny in person following our multiple communications. As I was leaving the house, I was telling Gwen’s nurse about where I was going. I then looked at her and said, “Did you happen to know June?” She responds, “Erin, do you remember when you interviewed me and asked me if I was comfortable with seizures and I told you that I used to take care of a little girl that had seizures?” “Yea I remember that.” She says, “Well that little girl was June.” That gives me goosebumps every time.
- Like June, Gwen is legally blind
- Like June, Gwen’s disease robs her from the typical childhood milestones….sitting, walking, running, talking, eating, and so forth.
- But most importantly… Like June, these two girls have the ability to change the world, the ability to teach you the importance of life, the ability to remind you to appreciate the small things, the ability to demonstrate amazing strength, and the ability to capture your heart in a single second.
Two families walking similar journeys, interacting with the same medical teams, dealing with the emotional heartache of a terminal diagnosis; but paths had never crossed until Gwen was granted the June Jessee Memorial Foundation grant. We are so thankful for a sweet angel named, June, for orchestrating all of this. Her legacy lives in the hearts of many children who are still fighting the daily fight.
Once we received the June Jessee grant, we hired an agency for night nursing hours. A typical night at our house consisted of alternating positions of caregiver and sleeping parent. Last year at this time, Gwen’s sleep was almost non-existent some nights. The combination of multiple seizures while attempting to sleep, muscle spasms, sleep apnea, and reflux equals a bad recipe for a peaceful night. Our caregiver methods of madness were always changing. We tried the “alternating every 2 hours” method….you slept for 2 hours and then you were caregiver the next two hours and so forth but that led to neither Mark nor I sleeping much at night except for small increments of time. We then switched to the “night on/night off” method….meaning you were caregiver for a whole night but then you knew you had the next night to sleep. I can vividly remember going to work on many occasions thinking, “I slept two 45 minute shifts last night.” To be awarded a grant that allowed us to hire night nurses was simply a God-send! Did we beg insurance for night nursing coverage? Yes! Did we want to hire night nursing prior to this? Of course! However, this journey isn’t just emotionally and physically stressful…it is also financially stressful. We knew what we HAD to pay: hospital bills, uncovered pieces of medical equipment, monthly medications, co-pays for specialists and therapy; meaning there isn’t always left over funds for private nursing hours to allow us the luxury to sleep. People would always say, “I don’t know how you do it.” Was it easy? Of course not! Were we beyond exhausted? 100%! But we did what we had to do to provide the best possible care to our daughter. But you also learn that you cannot be a great caregiver unless you properly care for yourself. Night nursing allowed Mark and I the opportunity to sleep 8 hours at night, a chance to re-charge our batteries, a chance to be husband and wife rather than tag-team caregivers, and ultimately a chance to be more clear-minded for Gwen. You may not think a couple nights of night nursing sounds like much, but it is a huge gift when you are stressed, exhausted, and running on empty!
The June Jessee grant provided more than just a financial gift to our family. Just as equally important, it provided us a friendship with Matt and Genny. A year ago, we were essentially strangers. Today, there is a deep friendship that is grounded by an understanding, empathy, love, and support that only people can share when they have experienced a similar journey. Mark and I have been blessed with such supportive family and friends through all of Gwen’s highs and lows, but there is something extra special about the support of another couple that has walked the path before you and been in your shoes. To Matt and Genny, thank you for holding our hands during this scary, unknown, and heartbreaking journey; thank you for listening in times of need, thank you for the advice, thank you for sharing June’s memory with us, and thank you for allowing us the opportunity to be a part of June’s legacy.
To all of you, simply stated… thank you for being here today. Your presence and generousity is providing both financial and emotional support to children and families when they need it most. Thank you for making a difference in the lives of the brave children still fighting, like my daughter Gwen. And thank you for helping us remember the brave girl who started this all, sweet June.
I saved the best for last….
This story took place the first time we took Gwen to the Jessee’s house. This was the first opportunity for George to meet Gwen. For anyone who doesn’t know George, he is June’s little brother who is 2 years old. We got Gwen all set up in the living room with her go-to travel accessories… her comfy blanket and boppy pillow. Shortly following, George comes running into the room to meet his new friend, Gwen. He looks at Gwen, and then looks at his parents, and then back at Gwen. He then points to her and says “June?” It was a beautiful and bittersweet moment all wrapped in one. To June, I’m sorry we never had the chance to meet you but I can assure you that your spirit lives in the hearts of many. Last year, we were blessed to be benefitted by your legacy and this year we are honored to help carry on your legacy. Thank you for connecting our families and thank you for watching over your fellow superhero, Gwen!
Thank you all very much!
Erin is Gwen’s mom. Gwen is the first recipient of the June Jessee Memorial Foundation grant at St. Louis Children’s Hospital