Happy birthday Lottie!
In upper Ohio, Charlotte or "Lottie" celebrated her 5th birthday and is Casey Cares' 140th birthday this year!
Casey Cares knows that for a critically ill child, each birthday is a special milestone celebrating life. For the children in our programs, it not only marks another year, but it also demonstrates a great achievement. Casey Cares staff and volunteers work hard to send out each of our kids a special birthday package through our Birthday Blast program - we send over 1,000 a year! This simple act of kindness delivers joy and hope to our kids who are undergoing treatment.
Frequent Seizures Leads to a Diagnosis
Eve, Lottie’s mother states, “Lottie was first diagnosed after a series of what we thought were fainting spells or seizures. These were in truth caused by pulmonary hypertension. The gravity of the disease did not fully hit us until she had a 15-minute cardiac arrest. An echo of the heart revealed an enlarged right ventricle with very high pressures. She was diagnosed with pulmonary hypertension and started on nitric. It was a very scary period of time where we didn't understand the severity of the disease or rarity.”
Currently, Lottie and her family are awaiting news on her possible admittance in a drug trial for pulmonary hypertension.
Eve explains, “There are a limited number of spots throughout the entire world. Hopefully we can get Lottie as one of them, but it's not up to our team, it's up to the drug trial and whether she will qualify. If not, we will wait until the drug is approved for adults and hopefully use it as compassionate care which is how we currently have been approved for all of her other medicines. At this time, we have not heard any more information on the drug trial. It sounds like the spots for her age group are very competitive so I don't know if we'll get in.”
Fun For the Family
Joining Casey Cares in 2021, Lottie has attended activities such as Paw Patrol Live, cheered on the trucks at Monster Jam, watched the Nutcracker Ballet, gone to the Garden Bros Circus, and more.
“Our favorite activity that we've done with Casey Cares has got to be Disney on Ice or the Nutcracker. Both of these would not have been financially possible without the generosity of Casey Cares. To see all the kiddos faces just light up in wonder is just so fun. Core memories are made for sure. I love that our kids find it awe inspiring to watch and think that's what I want to do when I grow up,” states Eve.
She continues, “I love how Casey Cares includes the family in all their events. I think siblings of a medically complex kid often get pushed to the side - or how it seems to them - and my kiddos love that they get to do these things too, whether it's going to Monster Jam, getting family movie night box with jammies which was huge family favorite or Disney on Ice. I specifically remember unpacking our first pajama box and my older kiddos were especially excited to have been included.”
Eve is also thankful that Casey Cares “puts the focus of creating these amazing memories for our family. I know that there's a possibility that our time with Lottie might be short here on Earth, but there is some peace and knowing that if that happens our kiddos will have so many good memories too hang on to with her. We are hoping and praying that this may not be the case and she will live long fulfilling life, but we know no one's time is guaranteed.”
Recognizing Challenges
“As a parent who has a child with health challenges,” Eve says, “our difficulties present in different ways. It's important for us as parents to make sure Lottie feels as "normal" as possible. So, in order to do that we adapt what we can to make sure she feels like she's had the same opportunities.”
“In similar retrospect we also have to be cognizant to make sure our other kids feel like they are loved just as much as Lottie. When you have a sick kid a lot of the attention goes to them because their needs in particular moments are higher, but reassuring and showing our love in other ways for other kids to make sure they don't feel left out there's also really important for us.”
Eve adds, “One of my personal difficulties I had and sometimes still struggle with is the grief of what I thought our life was going to look like when we had all healthy children versus the realities that come with a medically fragile kid. I love the idea of just getting up and going somewhere, but for us that requires more planning then do we have gas in the car or snacks for the trip- you have to have enough oxygen, you have to make sure all the meds are with you, do we have extra supplies for a site change if need be.”
“Other difficulties are things that I imagine most medical families struggle with - insurance, cost of meds, time away from work, travel to and from appointments, unexpected hospital stays and so on. As far as navigating and coping, I know we have been really blessed with amazing family and friends. Without our support system I don't know how it would have managed so far. And I know above all I could not have done this without faith,” she says.
A PHighter
Today, Lottie is attending Pre-K this year with plans to head onto kindergarten in the fall.
“Lottie also had her first ballet recital, which she just loves. She's super cute too watching with her big smile, tutu and oxygen backpack just twirling around. I think we realize that every year we get is just a gift,” Eve states.
“Lottie is stable for now and that's a really big deal for us. It can be easy in our day-to-day routines to sometimes forget how sick she really is. She's on a lot of medicine to keep her where she's at. I don't want to jinx it but we've not had a hospital stay for a few months and I'd like to keep it that way. She has overcome six cardiac arrests, a period on extracorporeal membrane oxygenation ECMO, multiple hospital stays and still manages to put a smile on all our faces- she is truly a PHighter which is pulmonary hypertension plus fighter,” Eve concludes.
Want to support more programs and fun activities for critically ill children like Lottie? Donate here!