Introducing our Summer 2022 DREAMERS
My son, Layne, was born a twin. He came into the world way too early, at 28 weeks, with his sister, Evalene. Aside from needing to gain a lot of weight, they were quite healthy. They each received two blood transfusions, and were in the NICU for approximately 3 months. When they came home, they were both on a strict feeding regimen, they were fed a high calorie formula every hour for one full year. Because we live in the middle of the Pennsylvania woods, very isolated, and we are very private by nature, that first year was incredibly difficult as there were no friends nor family to step in and help. Time passed, and as time passed, it became glaringly obvious that our son was simply not progressing typically. We heard a lot of boo-say about it. "Don't compare the two, every child progresses at their own rate!" Yes, we understand that. We are not paranoid people, I live by the saying, "Don't invent a problem that isn't there." This had nothing to do with comparison, it was a simple observation that across the board, Layne was simply not doing many typical things that a child does. He had no interest in his family, or our pets. He didn't want to play with anything, there was no bringing Mom the phone to talk, there was no making little trucks race around and saying "Vroom, vroom!" There was no development of language, at all. His days were spent spinning the lids to an authentic metal cookset my sister had bought them. His only true love seemed to be particular movies or shows on our television. The music from Jeopardy would bring him on the run, as would the theme song to the old Poltergeist movie, lol! When he was 3, his shocking indifference to the rest of the world made some doctors believe he was deaf. We took him to Pittsburgh Children Hospital for in-depth testing. The lady smiled at me and said the words I had been desperate to hear a professional admit. She said, "Tell those doctors back where you live to familiarize yourself with what autism looks like. Your son is not deaf. He has autism." There was no falling apart, no crumbling and feeling like the world was swallowing us whole, only a relief that Layne's Dad and I are not insane, what we had known in our hearts was true. What is going on with Layne has a name, and now we can begin. And that's what we've been doing all these years, assisting and guiding our son into becoming who he is. Because we were already well aware that he had autism, there was no "denial" phase. We had accepted it long before someone with a degree told us so.
Our son Layne has what is referred to as level 1 autism. What this means for our family is that Layne is severely cognitively and intellectually impaired. He is completely nonverbal. He is dependent upon us for his needs and his care, such as eating, diapering, etc...he is prone to severe meltdowns where he is capable of injuring himself, although I am happy to say that with the right blend of medication, (medication to treat both autism and severe ADHD, which is his dual diagnosis,) these meltdowns are much less frequent and severe.
Let me tell you about our Laynie...
He still loves his particular shows and movies. He loves his stuffed giraffe, Jeffrey. He runs to his twin sister for comfort. He shows affection in his own individual way. Tapping his head against yours. Intense eye contact. Kids with autism aren't supposed to make eye contact, right? Taking your hand, even for a moment, until the sensation is too much to bear for him. He hates sweets. He loves dry cereal and iced tea. He learns at his own pace. It took 4 years for him to be able to place a drink on a table instead of smashing it on the ground. But he got it. Eventually, he got it. It took years for him to learn to put his feet out for us to put socks and shoes on. But he got it. Our hope is that in the future, he is able to use some type of picture system, or use his tablet which he simply scrolls, over and over, as a means to communicate effectively with us. He loves his special education instructors, and looks forward to school each day, even though it is very difficult for him and come noon, he is definitely ready to come home. He loves when Dad drives him around the yard on lawn cart.
Oh! And he is soooo beautiful.
“Ava The Brave” a nickname given to Ava a couple of years ago. Why? Ava was diagnosed with ROHHAD 4 years ago in The Children’s Hospital of Philadelphia. You’ve probably never heard of it before, I know we hadn’t at the time. ROHHAD is an acronym for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H), and autonomic dysregulation (AD). It is a rare, serious syndrome that affects the autonomic nervous system (which controls involuntary actions like breathing and your heartbeat) and the endocrine system.
Ava is one of around 200 people in the world with this diagnosis. She goes through multiple visits to CHoP and Lurie’s Children’s Hospital in Chicago a year. Because there is currently no cure for ROHHAD, Ava is constantly tested, evaluated and re-evaluated to make sure her condition is stable. Ava is such a resilient girl and takes her situation in life with such grace it’s inspiring to all that know her. We want to thank Beachview Dreams Foundation for giving us the opportunity to allow Ava a break from the hospital visits, testing, stress and anxiety of her life and letting her just be a kid playing at the beach. I know we all need it.
Isabelle, or Izzy as she prefers to be called, was born in Scranton, PA on October 05, 2002. Her family was extremely excited to meet her. Her Mom, Jaime, and her Dad, Danny, wanted nothing more than to be parents. Unfortunately within minutes of her birth, the medical staff along with her parents, grandparents and Godmother knew something was not quite right. Izzy had ingested afterbirth and her breathing was labored. She was quickly transferred to a nearby hospital with a NICU. Following a few days of tests, Izzy was diagnosed with meningitis. She battled hard as a baby and beat the odds (some doctors didn’t think she’d make it through her first night). In true Izzy fashion, she proved them wrong (the first of many times she has shown that through sheer determination and perseverance, she can overcome anything). She developed slowly as an infant and toddler, eventually being diagnosed with Psudo Bulbar cerebral palsy and that she would never walk or talk. But that’s not Izzy’s story - that’s one part of who she is.
Izzy LOVES to sing and dance. She doesn’t care who’s around to watch or join in, she’s jamming out. She also loves sports. She plays baseball, soccer, basketball and runs track. She competed in Special Olympics as a runner and thrower for many years. This past year, her unified Bocce team made it all the way to PA State playoff. She is an amazing bowler and loves fishing as well.
Izzy also loves animals. She has three dogs, Carly, Ella and a dog named Izzy (yes, her dog has the same name). She also has a Guinea pig named Emma.
Izzy graduated high school this year and is going to work at a local pet store. She loves the water -pools, hot tubs, long baths. She also enjoys the beach on hot, sunny summer days.
Most of all, Izzy is the kindest, sweetest, loving person who makes her family proud every day. She has a pure heart. She makes the most out of life and embraces the possibilities life has to offer, focusing on what she can do, not what she's told is out of her reach.
Hi my name is Bridget. I am a wife and mom of 3 beautiful daughters. The shock of a breast cancer diagnosis hit us all very hard in December, 2021.
Here is a timeline of 7 months of my cancer journey:
November 15 - I found a lump in right breast.
December 2 - I had a mammogram and ultrasound. (Found out my lymph nodes were also swollen)
December 14 - I had an ultrasound guided biopsy on both the lump in my breast and lymph node.
December 17 - @ 4:00PM I was told over the phone I have cancer!
December 22 - I went to my first oncologist appointment and was told I have triple negative breast cancer. I will need 12+ weeks of chemo starting in 3 weeks, surgery, and then radiation.
December 26, after Christmas - I told my kids.
December 27 - I had gene testing done. (Results were negative)
December 27 - I had an echo test done.
January 5 - I had a breast MRI!! (It was not fun!!)
January 6 - I had a pet scan.
January 7 - I got my port put in.
January 14 - I started weekly chemo.
June 3 - I had my last chemo treatment!
I am scheduled for a DMX (double mastectomy) on July 26th and will need 6-8 weeks recovery time.
The love and support from my family and friends has been what has kept me going in this fight of my life. To get an opportunity to spend time at the beach and relax after all of my treatments while I'm healing before my surgery is a great gift!
Mira & Achylles
Mira and Achylles are 14-year-old twins who moved to New Jersey from Queens, NY in the fall of 2019. They are both strong-willed and loving children. Although they share many similarities, they are also very different and have their own set of challenges. Mira has Down Syndrome with a side of Autism and is nonverbal. She had open-heart surgery at one-year-old and many ear tube surgeries. She loves to go to school and has a great sense of humor. Mira loves to spend her free time dancing to her favorite music in her bedroom. She is a total Swiftie, loves Adele, and her dad’s favorite 80s metal rock bands.
Achylles has Autism and extreme anxiety as well as OCD. All of these were made worse during the pandemic. New situations, social gatherings, and changes are very challenging for him. The beach has always been his favorite place. Achylles is our “super memory kid” and my personal calendar. He loves his cat Yogurt, highways, and toll booths and is better than a GPS. He can play any tune by ear on the keyboard and loves to paint and swim. Achylles is funny, loving and a great big brother who always makes sure his sister gets a slice of pizza.
Our children are our heroes. Mira and Achylles are the true definitions of resilient. They are the bravest people we know because they get up every day and go out into a world that doesn’t understand them and doesn’t always see them. They work twice as hard for everything. They love the Jersey shore and can’t wait to end their summer with a splash and some awesome pizza. We are so grateful to Beachview Dreams for giving our heroes and all the other kids like them a family vacation after the isolation of Covid. Thank you for seeing our children and giving our family this amazing opportunity!
My name is Francine. I was a practicing Registered Nurse for over 20 years. I am blessed with five wonderful children, all taller than I am. I'm pictured here with four of them. Their ages vary from 14-28. I gave birth to my third child in 2004 at the age 40 and developed a (right foot drag) limp after giving birth. I was made to believe that the foot drag was due to a pinched nerve but I would later find out that the disability was due to a drop in my estrogen level related to Multiple Sclerosis. After I had twins in 2007, I was formally diagnosed with Multiple Sclerosis. My MS progressed as my estrogen level dropped after I gave birth. Although my symptoms ceased when I was pregnant, once I gave birth and my estrogen level dropped, my disabilities showed up. I became dependent on utilizing a wheelchair and a FES (functional electrical stimulator) shortly after I gave birth to the twins. I have continued to live independently, but my children take me to my doctors appointments and food stores. My children support me in every way and I am so lucky to have such special and supportive kids. I have finally gotten authorization for a scooter which I recently obtained. I try to walk as much as possible, even though it is for very short distances. I do this by holding on to walls or walking short distances on my childrens' arms, but I mostly rely on my wheelchair to get around. Having this disability has definitely been a tremendous struggle for me and for my children as well I am so grateful for the opportunity to spend a week at the beach with my them as it is the first time we have been able to vacation and spend quality time in over ten years and it's the first time in 15 years that I will be able to feel the ocean water on my feet! I am so looking forward to smelling the sea air and putting my toes in the ocean.
Justin has been fighting cancer for most of his 13 years. When he was 9 months old, our world was shattered when he was diagnosed with hepatoblastoma, or cancer of the liver. Hearing "we think your child has cancer" really is one of the worst things you can ever hear. Justin went through 6 months of chemo and surgery to remove 75% of his liver. It was tough, but we made it through and hoped to return to regular life after that. Unfortunately, we didn't quite make it a year before we were hit again. This time I, his mother, was diagnosed with an abdominal wall desmoid - a non-metastasizing but locally aggressive tumor. I had surgery to remove my right abdominal muscle. My doctors didn't think I needed more follow up, but I happened to google my diagnosis along with Justin's, and I knew there was more there. Justin and I, along with his older sister, were diagnosed with familial adenomatous polyposis, or FAP. It's a genetic disorder that predisposes carriers to many different cancers. I had no idea that I was affected. Our lives have been turned upside down so many times since our diagnosis. I had my entire colon removed about a year after my desmoid surgery because FAP comes with a 100% chance of colon cancer. We had a few years after that without any serious health issues. Then, during the first week of second grade, Justin was diagnosed with medulloblastoma, a brain cancer, after suffering from headaches and nausea for several days. He was rushed into surgery to remove the tumor at the base of his brain. He had 6 weeks of daily radiation and 9 rounds of chemotherapy. His treatment lasted a year and a half. He missed a lot of school and was pretty isolated. It was hard, but he powered through. Less than a year later, I was diagnosed with stage 4 intestinal cancer. This diagnosis was extremely hard on not only me, but my children as well. Even though I'd had my colon out and was closely monitored with periodic scans and scopes, cancer still found a way to slip in and grow unnoticed. We were pretty scared. My treatment lasted a full year with 12 rounds of chemo, a large surgery and 6 weeks of radiation. I was very lucky and my cancer responded well to the treatment. You'd think we deserved a break after that, but it wasn't meant to be. Just a few months after I was finished treatment, Justin was diagnosed with a benign brain tumor and had to have another brain surgery to remove it. Then Covid hit. A year later, Justin developed another tumor on the other side requiring a third brain surgery. When he developed a 3rd tumor a year later, his doctors knew something wasn't right. His diagnosis changed from radiation induced fibromatosis to an intercranial desmoid tumor - something extremely rare. He is currently receiving chemo every other week in the hopes that we can keep his tumor from growing back. Even after this is done, we won't be finished as both kids are facing their own color removal surgery and will have to be closely monitored their entire lives to keep cancer at bay. For our family, the fight against FAP will never end.
Through all of these struggles, Justin and his sister Anne have shown remarkable strength and courage. Justin faces every new diagnosis and surgery with determination. He does not cry or curse his fate. His attitude is always "get this over with and get on with living". I don't know how he does it because the weight of it all brings me to my knees very often! His diagnosis hasn't made him hard either. Justin is about the sweetest guy you will ever meet. He's kind, caring and polite. Everyone that meets him loves him. He wants to best for everyone he meets. He had the biggest heart.
Justin is really looking forward to the opportunity to spend a week at the beach. The last few months (years!) have been draining and he's looking forward to some time to relax and forget about hospitals for awhile. We are so grateful for the opportunity to take a moment to breathe and just enjoy each other's company. Life is hard, but it makes the good times that much sweeter.