We’ve been celebrating #NationalWearYourPajamasToWorkDay and #CaseyCaresBiggestPJParty all month-long!
We cannot even begin to describe how grateful and thankful for YOU and every donation that has been made and will be coming in! From dozens of Amazon boxes arriving toour office each week and schools like Rosedale Christian Academy whose students brought in 1,726 pajamas, each pajama and gift card donation makes a big impact. Thanks to businesses to schools to religious groups to clubs, THOUSANDS of critically ill kids in hospitals across the country will get a familiar comforting item and it will bring a smile to their faces! We’re excited to announce our final pajama total in a few weeks and we look to reach our goal of collecting 17,000 pajamas!
We loved seeing everyone wearing their pajamas in support of our programs! Thank you! Did you know you can support #CaseyCaresBiggestPJParty any day of the year long? You can keep collecting pajamas and checking out our Amazon wish list or donate money towards pajamas here!
It was the perfect day for Florida tennis players! Wellington Tennis Center hosted the Casey Cares Love-All Tennis Tournament as a sold-out crowd of over 100 participants rallied on the courts to play tennis in support of the Casey Cares Foundation. With friendly competition, giveaways, prizes, and a shared commitment to making a difference in the lives of critically ill children, it was truly a perfect day on the court.
A heartfelt appreciation goes to event co-chair and Casey Cares Board member, Kristina Bostwick for organizing the tournament. Proceeds from the event will benefit our programs that provide enjoyable activities to critically ill children
and their families. We serve over 195 critically ill children and their families in Florida alone, helping to make a significant impact on their lives.
Unfortunately, Ryder, an 8-year-old Casey Cares child diagnosed with Short Bowel Syndrome, and his family were unable to attend as planned due to a medical emergency (thankfully, Ryder is doing okay!). Casey Baynes read the speech they prepared which read, in part, “Thanks to the Casey Cares Foundation, we are able to give [Ryder] a childhood and experiences that we will never forget. he finally knows what it feels like to be part of a loving family and to just be a kid. We are beyond grateful to be a part of something so incredible. Thank you all for your support.”
Congrats to the winners of our matches:
Martina Flight – Jill Giocli and Melissa Angel-Johnson
Chrissy Flight – Laura Maher and Tracy Carter
Serena Flight – Wendie Unger and Kristi Bomar
Billy Jean Flight – Paula Diaz and Debbie DeDea
Andre Flight – Gary Harmon and Dean Barrett
Roger Flight – Mike DiMayo and Michael DiMayo
Rafa Flight – Thad Millsap and Stephen Jochnau
We are grateful to all the participants who hit the courts and supported our kids! Your involvement made a significant impact, and we thank you for your dedication to serving Casey Cares and the children and families it supports. Thank you also to our Tennis Committee members: Nora Conlin, Jessica Moisdon, Missy Lee, Diana Drayton, and Amy Roberts.
Thanks to all of our sponsors who helped make our inaugural tournament such a success!
Silver Sponsors: Kristina Bostwick, Ellen Onofrietto with She’s The One Boutique, Jessica Moisdon with Color Fast Studios, Kari Levy with KL Luxary Homes, The Walters Family, Dr. Elizabeth Gonzalez Bruno, and Lauriston Segerson
Court Sponsors: The DiMayo Fmaily Foundation
Team Sponsors: Brian Buckstein with GSB Law Firm, Doug Marty with Wellington National Golf Club, Scott Lee with SJW Law Group, House Call Trainers, and Dr. Kenneth Jaffe, MD, PMSI Promos
Thanks to the generosity of the Pittsburgh Pirates, Florida kids Sawyer and Chris enjoyed a special spring training experience! Sawyer, who loves fishing and football, served as the Play Ball child by announcing “Play Ball,” and later enjoyed the Pirates vs Detroit Tigers game with his family.
Accompanied by his parents, Jeanna and Ryan, as well as his brother, Sawyer’s attendance at the spring training event was a significant occasion for the entire family, who learned about his cystic fibrosis diagnosis after adopting him and his brother. Sawyer loved the entire day because of the “possibility of catching a ball and [eating] hotdogs.”
Since joining Casey Cares in 2019, Sawyer’s favorite activity that Casey Cares provided him with was a visit to “Monster Jam because it’s loud and a lot of fun,” he says.
With Casey Cares, the 11-year-old loves that the nonprofit, “helps brighten up kid’s days.”
Joining Sawyer was 16-year-old Christopher, who is also diagnosed with cystic fibrosis. Chris had the honor of throwing the first pitch and later enjoyed the Pirates game with his mother and father Michelle and Chris, along with his younger sister Ayla.
His favorite activity that Casey Cares provided him with was also the watching Monster Jam because “I love Grave Digger. I had a Power Wheels one when I was little that I could drive,” he says.
With Casey Cares, Chris loves that, “I get to do fun stuff with my family that we wouldn’t or couldn’t normally do.”
Thank you again to the Pittsburgh Pirates for continuing to give a once-in-a-lifetime experiences to Casey Cares kids like Chris and Sawyer! These seemingly little moments truly make lasting memories for critically ill children who undergo challenging medical treatments. Casey Cares always appreciates in-kind donations of tickets to sporting events for the kids in our programs! Please email them to our Program Director Summer at [email protected].
The Casey Cares 24th Annual Totally 80’s Gala was a rad night celebrating all of Casey Cares amazing programs and activities for critically ill children!
Beginning with a sparkling cocktail hour that included amazing food, drinks, a classic 80’s prom backdrop, and live jazz music, guests immediately were taken back to the 80’s! They even got to take pictures with the Charm City Ghostbusters group who made sure that our event was ghost-free!
The fun was emceed by the fantastic Weather Channel meteorologist and longtime Casey Cares supporter Lynette Charles and newcomer Stevie Daniels, the Weekday Morning meteorologist at WMAR.
Guests bid on amazing live and silent auction items – destination trips, a Jimmy Buffet guitar, VIP tickets to a Washington Capitals game, and more!
In addition, we showed a video highlighting one of our Casey Cares families. Micah is 6 years old and diagnosed with LAMA2 congenital muscular dystrophy. The video, sponsored by the Bostwick Family, illustrated the journey that Micah and his family have gone through and how much Casey Cares continues to support them. You can watch the video here.
The night ended with happy guests showing off their dancing skills!
A massive thanks to the National Foundation for Affordable Housing Solutions, Arco Management Corp/MMS Group, Arfaa Law Group, CohnReznick, King & Spalding LLP, The Bostwick Family, and Weltchek Mallahan & Weltchek for your generous sponsorships!
Gold Sponsors: Carding Group, EagleBank, Gragg Cardona Souadi, Henry A. Strohminger Family Foundation, MileOne, and Paul Capodanno with Capitol Wealth Management Group
Silver Sponsors: DiMayo Family Foundation, Ellin & Tucker, Live! Casino & Hotel, Reno & Cavanaugh, Salsbury Sullivan Law, and The Herman & Walter Samuelson Children’s Hospital at Sinai
Bronze Sponsors: Arnall Golden Gregory LLP, Constellation, CR of Maryland, Fulton Bank, Goodman-Gable-Gould, Adjusters International, Goulston & Storrs, Heineken, Janice & Greg Gallagher, Riverdrop Coaching & Consulting, Ruppert Properties, and Sons of The American Legion
Thank you to our wonderful media and in-kind sponsors: HeidnSeek Entertainment, DowntownDiane.net, WCBM Talk Radio, Bridge Tower Media – The Daily Record, Baltimore Magazine, Focus On Women Magazine, CityPeek, Atlantic Caterers, Berger Cookies, Charm City Ghostbusters, Electric Events DC, Tom Reyes & Friends, Triangle Sign Services, and White Clover Floral Events
Casey Cares founder and executive director Casey Baynes, presented our annual Champion of Children Awards to Natalie Arteen and Kevin Ebert from M&T Bank. As the recipient of our Champion of Children Award, M&T Bank has been a devoted supporter of Casey Cares families since 2007. From suite tickets to Capitals, Flyers, Wizards, and NCAA games to amazing concerts like Dua Lipa, Jonas Brothers and John Mayer, to sponsorships of our major yearly fundraisers, M&T Bank has made a significant difference in the lives of those we serve.
Casey Cares also wants to extend our thanks to Peter Watts from Five Arrows Photography and Teza Monet for the incredible pictures of the gala.
Thank you to everyone for your continued support for Casey Cares, our programs, and most of all, the over 1,600 kids and families we serve! Check out more gala photos here! If you could not make it to our Gala and want to make a donation, please do today!
Over the years, Casey Cares has had the privilege of touching the lives of thousands of critically ill kids thanks to your support. That includes children who have now graduated to the title of “alumni patient” of our programs. While some leave our programs when they turn 18, others depart when they no longer meet the criteria of being diagnosed with a critical illness, experiencing frequent hospitalizations, receiving active treatment, or being on hospice care. Each alumni patient’s journey is a testament to their resilience, the support they have received, and the lasting impact that Casey Cares has had on their lives. Read our first ever “Little Moments, Lasting Stories” alumni feature with Sa’Mari! Sa’Mari is no longer actively receiving treatment and she is no longer frequently hospitalized!
Sa’Mari Strong
After becoming Sa’Mari’s mother, Samia remembers, “thinking that I was blessed to have such a good baby. From the time Sa’Mari was born, she slept through the night and rarely ever cried. She was a very content baby girl.”
However, Samia first noticed something unusual with her daughter’s pupil.
“I first suspected something was going on when Sa’Mari was about two months old. I’d notice a white spot in her left pupil when I would take pictures of her with flash and sometimes even without flash, I would see it,” Samia states.
She continues, “Sa’Mari was diagnosed with bilateral retinoblastoma when she was four months old. Her original pediatrician referred us to a children’s eye doctor at Kids Eye Care of Maryland. From there the eye doctor then referred us to a specialist in Philadelphia at Wills Eye Hospital who confirmed her diagnosis. They advised us to start chemotherapy right away and that was what we did.”
“Even after our family learned of her diagnosis, I noticed that she was still always very happy and in good spirits all while going through treatment. She almost never had bad or sad days from what we all could see, and I was so grateful for that,” Samia notes.
After Sa’Mari’s retinoblastoma diagnosis, which is rare form of cancer that rapidly develops in the retina (the very back part of the eye), “her day-to-day care wasn’t very different from the average child. In fact, it may have been easier because of how easy going and calm she always was. As a baby the only time she’d really cry, or fuss was when she’d have to get labs or needles.”
Samia adds, “Throughout the years of her treatment, she was always positive aside from that which made caring for her fairly easy. I would say it has changed because she is older and more curious of things like why she looks different than other children and explaining that to her would likely be the hardest part of caring for her.”
Finding Support With Casey Cares
As her young daughter went through numerous therapies and treatments, Samia “learned about Casey Cares through my late aunt Sharina, who’s son, Uriyah is a part of Casey Cares.”
Having joined Casey Cares when she was two, Sa’Mari loved going to the Orioles baseball games, shows like Disney on Ice, and Ringling Circus.
“Our favorite activities were anything we could do together as a family. There was nothing we didn’t enjoy!” Samia says.
Reflecting on her family’s time with Casey Cares, Samia “loved that Casey Cares takes care of the whole family and makes sure to include everyone. Sa’Mari has been able to experience so much with her sisters and our family that I’m not sure we would’ve been able to do without Casey Cares.”
After Sa’Mari was diagnosed with cancer, Samia faced new challenges as well. “Being as though Sa’Mari’s treatment was so frequent, I couldn’t fully commit to a job until she completed treatment. Every time we’d think we were in the clear the tumor would return and we would have to start treatment again,” she states.
But, Samia credits her village for helping Sa’Mari, and herself, stay strong. “I can say that I have a great village behind us. We have received so much support over the years from numerous people including Casey Cares and other organizations. We have gotten a lot of support from our families, some of them even taking the time to come and stay with us for the week that she would receive treatment. We wouldn’t have made it this far without our village!”
She also notes that “my advice to any family with a medically complex child would be to just take everything one day at a time. While your child is most important, make sure to still take care of yourself and remember that you can’t pour from an empty glass so make your mental health and well being a priority as well as theirs.”
2023 marked Sa’Mari’s first full year in her life that was completely cancer free! The family celebrated her end of treatment with 5 day trip to Disney World for her 3rd birthday. “It was so fun and memorable for our whole family,” Samia says.
An Alumni
After years of endless treatments and surgeries, Sa’Mari’s care going forward has changed.
Her mother explains, “Sa’Mari is able to live a normal life. Since ending treatment she’s enrolled in daycare, made tons of new friends, and been able to just relax without all of the stress of frequent hospital visits. We still have a little ways to go before she’s completely in the clear but we’re grateful for every moment we have together no matter what it is.”
She adds, “It’s a bittersweet feeling becoming an alumni of Casey Cares because we’ve been able to make so many memories as a family with the program. It’s brought us together in many ways. I’m glad that with Sa’Mari becoming an alumni, another child will be able to become apart of the program and be able to create the memories as well just like she did.”
Samia concludes, “Sa’Mari has formed a strong bond with just about every person she’s ever met. Her spirit is truly something I’ve never witnessed until I had her. She is one of the sweetest little souls I’ve ever met. She’s nothing short of one of a kind.”
Your support helped bring dozens of fun activities for Sa’Mari when she was a patient in our programs! Help more kids like her here!
11-year-old acute lymphoblastic leukemia survivor, Giana completed her 9th annual pajama drive for the Casey Cares Foundation, who supported her throughout her treatments. Her final pajama count when she dropped them off at Casey Cares’ office with her friend Josephine was 270!
Giana started collecting pajamas for Casey Cares in 2015 at 3 years old. She joined Casey Cares programs that same year and participated in activities such as visits to the National Aquarium and Port Discovery, attending a Princess Ball, watching the skaters at Disney On Ice, and more.
Thanks to donations from friends and family, her total for the “past nine years is at 2,351 pajamas” says Rita, Giana’s mother.
The idea of collecting the pajamas happened before Giana’s treatment began. “Before being transferred to John Hopkins Hospital, the first hospital gave Giana a children’s gown that was too big for her little body. It was cold in the ER room and the gown’s fabric didn’t help keep Giana warm. The positive to those gowns is that it helped with her IV line that was attached to her port but all kids in hospital don’t have a port attached,” Rita states.
The family soon received new pajamas thanks to Casey Cares Kami’s Jammies program which provides new sleepwear to pediatric patients program on extended hospital stays and families who are isolated and homebound with a critically ill child.
Giana’s family keeps collecting pajamas, “for those kids & families that find themselves in the same situation as us.”
“During Giana’s first phase of treatment, we spent most of the month at John Hopkins Children’s hospital in-patient care. When she was released to go home, we received a package from Casey Cares which included a card, pajamas, popcorn, and a gift card to purchase a movie. We were thankful to be home but also thankful to create a moment as a family besides the usual medications, tubes, and treatment plans,” Rita adds.
She also explains, “When Giana finished chemo, we were so happy to move to the next stage of life after cancer. Although there is always that little voice that says it could come back, so I purposely try to focus on the facts. Prior to her last day of chemo we celebrated the other endings such as the last day of steroids which she particularly hates, last day of methotrexate, and the last day of intrathecal chemo.”
“It was magical to watch her ring the bell because we knew the meaning of it even though she might not have at the time. She does have late effects of childhood cancer treatment living as a childhood cancer survivor,” Rita says.
Rita states, “The two most memorable activities we had with Casey Cares were celebrating Giana’s 2nd birthday given that she wasn’t allowed to be around other kids due to her immunity. We were so touched with Casey Cares ability to make memories in difficult life circumstances.”
Casey Cares volunteers had surprised the young girl at her front door with cake, balloons, cupcakes and presents via our Birthday Blast program.
The mother continues, “The second memory is being selected by Casey Cares to go to Give Kids the World Village and Disney World in 2016. There was a party at the airport where hopeful energies were kept high until it was time to depart. I remember crying as we boarded the plane because everyone was so kind and all the focus was on celebrating the children.”
Giana became a Casey Cares alumni patient in 2019 after the conclusion of regular leukemia treatment. Today, Giana is now 11 years old and loves 5th grade along with the independence it brings.
“She’s a 5th grade school safety where she helps PreK through 1st grade students with carrying their bags, walking through the drop off parking lot, and navigating the hallway to their classroom,” says Rita.
Rita concludes, “Giana enjoys scootering and riding her bike outdoors, animals, making slime & friendship bracelets, and listening to her favorite artists Taylor Swift and Melanie Martinez. She’s really into skincare and loves facemasks. She’s a Junior in girl scouts and swims year-round.”
The pajamas donated by Giana will be counted towards Casey Cares Foundation’s 9th Annual #CaseyCaresBiggestPJParty held during the month of April. The pajamas will be distributed all year long to pediatric patients and home-bound critically ill kids via the Kami’s Jammies program in eight states and D.C. Want to sign up for our PJ Party? Click here! Plus, check out all the photos of Giana’s drop off thanks to the Capital Gazette here!
It was a fantastic sunny day for Florida pickleballers! On February 10th, Lakewood Ranch Country Club (East) hosted the Casey Cares Serve Up Smiles Pickleball Tournament as women’s and men’s teams rallied on the court to play pickleball in support of the Casey Cares Foundation. The tournament was filled with friendly competition, giveaways, prizes, and the shared goal of making a difference in the lives of critically ill children.
Proceeds from the event, presented by Acentria Insurance, will benefit our programs that provide enjoyable activities to critically ill children and their families. Donation boxes were available to accept gift cards and new pajamas for the popular Kami’s Jammies and Hammy’s Heart initiatives. Hammy’s Heart offered grocery assistance to families burdened by medical bills, while Kami’s Jammies supplied sleepwear to kids and families undergoing treatment.
Casey Cares Foundation serves over 190 critically ill children and their families in Florida, making a significant impact on their lives. During the tournament, Dillon, a Casey Cares child diagnosed with cystic fibrosis, and his family had the opportunity to share their story and express the impact Casey Cares had on their lives.
Congrats to our winners!
Women’s Team: RaeAnn Fein and Amy King & Becca Thomas and Giovanna Ramos
Men’s Team: George Prince and Blaine Laverick & Denis Cooper and JB Sassano
We are grateful to all the participants who hit the courts and supported our kids! Your involvement made a significant impact, and we thank you for your dedication to serving the Casey Cares Foundation and the children and families it supports.
Thanks to all of our sponsors who helped make our inaugural tournament such a success!
Platinum Sponsors: Craig & Lee Ann Reich, Allison Archer & Steven Eichenbaum, Patti & Tim O’Neill, and Laura Stavola with Premier Sotheby’s International Realty
Court Sponsors: Blain & Kimberly Laverick and Phoenix National Disaster Response
Team Sponsors: Melba Jimenez with Michael Sanders & Company, Nancy Ebel with Hill’s Travel Service, Soleta, Novo Nordisk, Align Direct Primary Care, Smoothie King, Face Foundrie, Jetset Pickleball, Tony & Ellen Ramy, Sue & Steve Deramo, Keith & Amy King, Chris & Michele Caba, Yvette & David Varnadore, Paradise Aquatic Pool Services, Frederick Mahon Mortgage Team, Suncoast Buying & Selling Team, Conway Golf Performance, and Stock Development
Gherkin Sponsor: The Pickleball Club
Partners: Dwell, Joola, The Lume Kitchen, Card My Yard Lakewood Ranch, Total Wine & More, Bradford Portraits, Jacksonville Jaguars, Wow Wow Lemonade Stand, Jennifer Jordan with LTM Balloons, Addict Pickleball, Healthy Bites Catering, Restore Hyper Wellness, N2U Salon 7 Spa, and BJ’s
In PA, Xavier celebrated his 8th birthday and is Casey Cares’ 130th 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.
Meet Xavier
Xavier was born with neurofibromatosis, a group of genetic disorders that cause tumors to form on nerve tissue, resulting in him having a trache and suction mach to take with him wherever he goes. Having joined Casey Cares in 2019, he has loved going to Disney on Ice, Sesame Place, Paw Patrol Live, and his watching his favorite wrestlers at his all-time favorite, WWE matches.
“Xavier’s favorite time was when we got us tickets to WWE wrestling events. All of us as a family watch wrestling and have so much fun especially Xavier. He loves when the wrestlers come to take pictures with him. If Xavier could, he would be at all WWE events!” says his mother Lisa.
She continues, “Casey Cares is amazing, because we can actually do things as a family a family of six. It’s hard to go to a lot of places when you cannot afford it but Casey Cares makes it happen and just to have these moments with Xavier and his siblings is a blessing and we cannot be more thankful to Casey Cares!”
The mother also acknowledges the that being a parent to a critically ill child “can be a challenge because mentally it does take a toll on oneself but we keep our faith strong and cherish every day we get to be with our son. Just being able to make memories together, and Casey Cares makes those memories real for our family. We spend a lot of time in and out of hospitals so you take things on a day to day basis and just [remember] to be thankful for each and every day.”
Lisa states, “As for the present time, we are waiting to go to Cincinnati Children’s Hospital which has the best airway clinic. Hopefully, the doctors can see if they can do anything for Xavier because where his tumors are located, they are near major blood vessels and organs.If they try to remove any of them, Xavier would have a fifty/fifty chance of survival and it’s scary so we keep our faith strong.”
For Xavier’s birthday, the family plans on having “a cake and pizza and to be home with the family, watching WWE like he says, and just enjoy his day,” Lisa concludes.
Want to support more programs and fun activities for critically ill children like Xavier? Donate here!
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!
In upper New Jersey, Benjamin or “Benji” celebrated his 8th birthday and is Casey Cares’ 135th 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.
Benji’s family discovered their son’s diagnosis at, of all places, a mall. Tamara, Benjamin’s mother states, “When Benji was 15 months old we were at the mall and we were talking to an older woman in a store. She asked some questions about Benji and then asked if he had MPS. We told him he did not and she mentioned that he had many of the characteristics of her brother who died of the disease.”
That night, Tamara, “looked up the disease and read many mom blogs and saw many of the symptoms that my son had, people with this disease did as well …enlarged head, failed hearing test, jaundice as a baby, noisy breathing, delayed milestones such as speech and walking. All of these symptoms alone did not necessarily mean anything but together they could. After a discussion with my pediatrician and a genetic visit we learned that my son had MPS 1 Hurler’s syndrome – a rare genetic disease that without any treatment would limit him to a 5-to-7-year life expectancy.”
Classifioed as a lysosomal storage disease, Benji underwent bone marrow transplantation for MPS 1 and has had a unique journey post- transplant.
Tamara states, “Unlike many kids who are off immune suppressants and starting immunizations and such Benji struggles with very bad Graft vs Host disease and auto immune hemolytic anemia. As a result, it took us 5 years to get off immune suppressants and to start to revaccinate him. It was a much longer journey than most of our friends and that made the struggle even harder. We would be happy for friends who would hit new milestones but sad that we still were not there. Despite all of Benji’s medical struggles he is the happiest, strongest and most empathetic person I know. In school he brings a smile to all the staff and students whether it is him singing down the halls, showing off casts from his latest surgery or drawing pictures to give away. He has a light within him that shines brightly.”
Having joined Casey Cares in 2021, Benjamin has loved receiving packages from us.
“Due to Benji’s immune suppression journey he spent 5 years not being allowed to go to events that kids love to go to like Paw Patrol Live, Disney on Ice, etc. In the last two years he has been able to participate in these events. Given the price tag of these and the fact that we have three young boys trying to get them to these events would be very expensive,” says Tamara.
She continues, “The fact that we are able to take him to these events now due to the generosity of Case Cares donors is amazing. We are able to make memories and expose the boys to things they have not necessarily been exposed to. Occasionally we get special gift boxes in the mail. Benji loves getting mail directed to him. Whether it is a birthday present before his birthday or a pajama party care package, getting meaningful mail is something he and I appreciate.”
Tamara recounts, “About 2 years ago, Benji was in the hospital yet again struggling with a complication due to his Bone Marrow transplant. We had tickets to Paw Patrol Live and I was able to take his brothers. Having that quality time with his brothers, doing something fun and enjoyable was really important. There are many times his brothers feel like Benji gets a lot of special time with mom and dad and has good things come to him to make up for all the negative hospital experiences.”
Thus, Tamara appreciates that Casey Cares allows “the boys be able to get a special time with mom in a way that they might not have was really meaningful and important. It gave me a chance to focus on them when unfortunately, many times Benji’s medical needs are the priority. The first time I was able to take the boys to Disney On Ice all together was magical. They loved the music and lights and just being there together. I loved watching their faces and knowing that for so long this was something Benji could not safely be a part of but now he can.”
The mother notes the difficulties of being a parent to a critically ill child.
“One of the initial struggles we faced was trying to get all the specialist appointments we needed scheduled in a timely manner as well as trying to decide where to go for treatment. Obviously, we wanted the best treatment possible for Benji especially since one of the treatment options (and the one we chose to do) was a bone marrow transplant.”
She adds, “When we first got our diagnosis we were struggling with all the emotions one does with new diagnosis…fear, anger, frustration, doubt, sadness, confusion, plus I was only about 4 months postpartum with my second child. There was a whole lot of information thrown at us that we needed to digest without really having the time to digest it. We literally had to make life and death type decisions without having had time to really digest and understand the information thrown at us. My husband and I leaned on each other as well as reached out the National MPS Society in order to get support to help us on our journey.”
Today, Benjamin is getting ready for a great birthday party, even with both of his hands in casts due to a recent carpal tunnel surgery.
“Despite this, he is excited for his police themed family party complete with a rice crispy cake and his friends party a week later after casts are off. This is only the second year it has been safe for him to have a party with friends and he loves being able to celebrate with them!” Tamara concludes.
Want to support more programs and fun activities for critically ill children like Benji? Donate here!
Casey Cares volunteers had surprised the young girl at her front door with cake, balloons, cupcakes and presents via our 
