Starlight Families Share
Holly's Story
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(BALTIMORE, MD) - Holly, younger sister to Joshua, is a lively 7-year-old who was born in Hawaii and has grown up in Maryland. She dreams of one day going back to Hawaii to see what her birthplace looks like. Holly's family became part of the Starlight MidAtlantic when her brother Joshua was diagnosed with Aplastic Anemia, a bone marrow condition resulting in a blood cell deficiency. Even though Starlight MidAtlantic brightens the lives of the entire family from the time a child is diagnosed through treatment; Holly and Joshua have certainly brightened our lives as well!
Heidi, mom to Holly and Joshua, tells us that whether it's an Ironbirds baseball game or Disney on Ice show, "Starlight Escapes help us break out of our routine and do different things. It s something fun for us to do as a family." Holly and Joshua's family is looking forward to September s Enchanted Kingdom Starlight Escape. Holly might even break out her princess costume for the event!
Recently, Holly shared a few of her favorite things:
Have you started thinking about your Halloween costume? Yes! I am going to be Alice in Wonderland because I saw the movie. I was a beautiful princess last year. What has been your favorite Starlight MidAtlantic event? Monster trucks! I loved the Iron Man truck, Joshua liked it too. Is there anything special you do to make your brother feel better? I give him hugs, when he lets me. Do you have pets? I have 2 bunnies and a dog. The dog chases the bunnies around and plays with them. What is your favorite subject at school?Freeplay!
Preston's Story
(GREATER MD) - Preston is an athletic 12-year-old who loves playing manhunt, videogames, and reading. He is very active despite having to deal with his cancer diagnosis of Immature Teratoma in his right maxillary sinus. This rare condition has lead to numerous different treatments, surgeries, facial reconstruction, chemotherapy, and radiation. Preston has been reacting well to his latest treatment and has remained his strong-willed and persistent self.
Preston's likes include strawberries, the Boston Red Sox, and the Baltimore Ravens. His favorite subject is algebra and he has just finished the 7th grade (he skipped 3rd grade!). His favorite Starlight Escapes event was the circus because he liked seeing the tigers. While not as ferocious, he has an animal of his own at home, a pet bunny named Dutchy who is 3 years old. Dislikes include cancer and the hospital. A fun fact about Preston? When he was a year old and helping his dad plant a tree, Preston ate cow manure.
Preston's Mom tells us, "Our family is so thankful for Starlight MidAtlantic, because Preston has been very limited with his face and port. We were able to go to the Monster Jam Starlight Escape and enjoy the show. It was so much fun for Scott and I to see both our children laughing together with no worries that night. The Starlight volunteers and staff were so nice and welcoming. I was given a hug right off the bat, and I definitely needed that."
Zakki's Story
(PHILADELPHIA, PA) - My son, Zakki, was born 17 years ago with a congenital heart defect. His complex congenital heart disease combined with unrelenting lung disease has made oxygen 24/7 a necessity for two years at a time, along with a primary immune deficiency that requires 8 hour infusions every couple of weeks, complicated adrenal insufficiency along with a fairly large stroke and status seizure are some of the 15 or so major diagnoses. We are kept busy with more days at the hospital than at home. He has been awarded warrior status logging 263 days at the hospital in one year recently.
The most difficult part for him, and for me, has been full body pain that took over his every minute for month after month. The intense pain has been very scary to him and the emotional toll of constant pain has been absolutely the worst part. But each time a Starlight invitation arrives and Zakki has something fun to look forward to, it eases the hard parts of being a critically ill kid. And when you are a mom of a child whose every breath counts, it is the fun outings and the chance he gets to be a normal kid that matter most. We have learned to really appreciate the simple things in life but the Starlight escapes are grand memory-making moments.
Zakki is a sports fanatic so naturally he loves the Phillies game Starlight Escape that he went to a few years ago. He faithfully watches every game so enjoying a night at the ballpark was his favorite event. Honestly, he likes every event he has gone to through Starlight MidAtlantic'sStarlight Escapes program.
The Starlight MidAtlantic staff has been very compassionate and understanding of what these special kids really need. As Zakki once wrote in a school essay about his experience with his own illness, "the best part of being sick is doing fun things that are for me and other kids with complicated illnesses and Starlight makes the fun things possible."
Trent's Story
(NORTHERN VA) - Trent is a very sweet four-year-old boy who is a voracious reader, superb dancer, and is impeccably polite. When you see Trent s beaming smile, you would never know that he spent the first 14 months of his life in the hospital or that he has undergone 18 major surgeries for various birth defects related to his diagnosis of VACTERL Association. In hopes of making happy memories together, Trent s parents enrolled their family in Starlight MidAtlantic'sStarlight Escapes program.
One of Trent s favorite Starlight Escapes was the December Cirque Holidaze event at the Kennedy Center. Trent s mother, Kelly, tells us how her family loved the imaginative performance, I just wanted to say thank you for the great evening - my kids (especially Trent) LOVED the show. Although these events cannot make Trent sillness go away, they can help brighten his life and ease the pain." Kelly explains, We ended up at Children's Hospital all day-- Trent is solely J-tube fed and his feeding tube broke, but as you know, with these kids, a day in the hospital is just another 'day in the park' for the norm, but having had the wonderful evening the night before made our hospital visit all the more tolerable.
When Trent isn t charming everyone at Starlight Escapes, he is taking a drama class, playing Starfall on the computer, and anxiously awaiting the letter of the day on Sesame Street. Trent is a superstar. He is in preschool and already helping his big sister with her kindergarten homework! Trent continues to be an inspiration to everyone around him and a wonderful addition to any Starlight MidAtlantic event.
Chris's Story
(PHILADELPHIA, PA) - Chris has been insulin dependent since his 1st birthday. Despite his Type 1 Diabetes this fourth grader aspires to become a doctor and to one day find a cure. Chris is an avid reader who especially enjoys the Diary of a Wimpy Kid book series. He loves playing basketball and cheering on the 76ers and the Eagles. Chris enjoys helping his mother in the kitchen and entertains his family with his ability to stand on his head and clap his feet (he holds the family record)!
Starlight MidAtlantic has been an integral part of Chris and his family s lives whether it s a Harlem Globetrotter s event which makes him laugh hilariously, or Linvilla Orchards where he gets to explore his devilish side. Chris s mother, Lisa, is grateful for Starlight MidAtlantic'sStarlight Escapes for providing worry-free events offering Chris and his family the opportunity to forget all thedoctors visits, needles, bad news and the rest of the negative stuff, if only for a short while.
Lisa believes that Starlight s events make all the childrenfeel extremely special and loved and you can see it written all over their faces, especially when Chris shows off the deepest dimples most people have ever seen. Thank you Starlight!
Hailey's Story
(RICHMOND, VA) - Hailey has her challenges withPolymicrogyria,Lissencephaly,Pachygyria, and Cerebral Palsy. However, neither her diagnoses nor her wheelchair limits her spirit. She loves boys (her mom shares that she s a flirt), books, dancing, shoes, roller coasters and amusement parks.
Hailey became a part of the Starlight family when she first participated in the RichmondStarlight Escapes program in March 2008. She regularly attends events with her mother and grandmother and has since joined us for both the Ringling Bros. Barnum and Bailey Circus and Disney on Ice twice.
Richmond s JuneStarlight Escapes event, which took place days after Hailey s tenth birthday and her donation to Locks of Love, proved to be a great day for Hailey and her family.Popkin s Tavern prepared a special dessert for Hailey. And, Starlight MidAtlantic contributed to the opportunity for her to attend her first full scale musical production,The Sound of Music at Theatre IV.She had a blast! She was dancing in her chair almost the entire time& with a big cheesy grin,her mom, Heidi, began.There were quite a few occasions when the tempo picked up, that I thought her laughter was going to become uncontrollable.
Hailey s mom expressed her appreciation for theStarlight Escapes program by sharing,thank you so much for all that you do for our kids! Starlight makes such a huge difference for our family!
Maya's Story
(WASHINGTON, D.C.) - Maya approaches life with spunk and enthusiasm. After undergoing a liver transplant at the age of four, she has overcome each obstacle with a positive attitude.
Maya has attended many of the StarlightEscapes family activities, including sporting events, ice skating at the National Sculpture Garden, and visiting the circus. She spoke about these experiences and her transplant during last year s gala.
Even though I know that the Starlight Escapesare not just for me, and are for all of the Starlight Mid-Atlantic families,she explains,the Starlight Escapes always seemed planned with me in mind!
Ben's Story
(GREATER RICHMOND, VA) -It was almost a year ago when Ben and I attended our first Starlight MidAtlantic event. At that time, the only other children Ben had any contact with attended clinic with him.
We had made it through five of the worst months of our lives. Ben felt isolated from his friends and received adverse attention whenever we went out. It was only after he was able to return to school full time in November that I found out how much it hurt him to be known as the "bald sick kid in the wheelchair." He managed to hide most of the pain behind his big smile and just shrug it off. Starlight MidAtlantic opened a whole new world where he could laugh and feel special with other kids and not think about the clinic.
It was then that my "Ben" started to return.
Ben loves attending the Starlight events! Our family is so grateful for all that you do! You bring so much joy to so many people. Thank you!!!!!
With love, Priscilla - A Starlight MidAtlantic Mom
Much-Needed Escape
(NORTHERN VA) - It was so nice to meet you today at the skating event. Our family had so much fun. These events really lift my family's spirits. Dawson has to have infusion sites and tubing inserted every three days. This is a very painful process and we often talk about our latest Starlight MidAtlantic escape to help Dawson keep his mind off the pain. Life is tough living with such a devastating disease. It really affects our entire family. Thank you for allowing my family to have much-needed "escapes."
Eleanor - A Starlight Mom
I'm Special, Aren't I?
Yesterday I cried... Not because my son came home from school crying due to being teased. Not because he faces another surgery, and casting. Not because I need to tell him yet again, it's ok to do things different than everyone else. And not because I beg the Lord to switch places with me, and heal him so he can be just like all the other boys.
I cried because he told me that thanks to Starlight he felt like a king this week. He told me he thought we were rich. And because he asked me 'mom, I am special, aren't I?' That itself was worth every tear I ever shed.
A Starlight MidAtlantic Mom