Introducing our Summer 2023 DREAMERS
Anna has always loved the beach! When she was very young, she toddled over, picked up the tow rope for her older sister's boogie board, dragged it to the water, and plopped down on it! She is always up for an adventure and her attitude is "Count me in!"
As Anna grew up, she developed a severe spinal curvature and lost her ability to walk. She had spinal fusion surgery and has been working for years to rehabilitate. She is now able to stand and even walk with assistance! She can sit up without support and has learned to drive her own wheelchair! Every day, she listed the things she would pack in her beach bag, pretending to reach for them and put them in an imaginary beach bag. This was very motivating, and helped her build her core strength. Her nurse and I began to dream about how we could get her to the beach.
As I searched online for truly accessible beach housing with a roll in shower, the places were all a plane trip away, which would preclude Anna from going since she carries an oxygen tank on her chair at all times in case of a seizure. Then I came across Beachview Dreams, and it looked like it would actually work for Anna! Even better, it's located at the same beach where she dragged that boogie board to the water so many years ago. We are so grateful that Beachview Dreams has given Anna the opportunity to return to the beach that she loves!
Tyler & Megan
These are my children Tyler 26, Megan 24, and Bailee 9. Tyler and Megan are diagnosed with PMM2 CDG Type 1a. Although born with this disease, they were not diagnosed until they were 3 and 4 years old. This disease affects every aspect of their lives. They have a small cerebellum resulting in many delays including gross motor, fine motor, speech and intellectual disabilities. In the early stages of their lives, they suffered from various feeding issues, reflux, and failure to thrive. They both required feeding tubes to survive. They have since had them removed as they began to eat more food by mouth and attended and intense feeding program at Hershey Medical Center.
Since the early years of their lives, Tyler and Megan have thrived. Tyler walks with a walker. He is a witty young man with a sense of humor like no other. He loves gaming on his Xbox, watching NASCAR, teasing his sisters and picking on everyone he meets. He has a way of making everyone around him smile with his goofy humor.
Megan is a sweet girl with a fierce temper. She has a smile that will light up any room. She is empathetic and caring. She loves to be the mother hen of the family. Megan uses a motorized wheelchair. She loves coloring, doing workbooks, playing on her tablet, playing with her baby doll and hanging out with her baby sister. Megan’s physical health has declined. She used to walk with a walker but due to hip problems she is now in a wheelchair. She crawls throughout the house but when out she needs her chair.
Tyler and Megan have taught everyone in our house how to love at a greater level. They have shown us unconditional love and we are a better family just because they are in our family with their different abilities.
Teddy's primary diagnosis is Cerebral Palsy (multiple brain damage), cortical
visual impairment, setd5 syndrome, seizure disorder and diabetes insipidus.
Throughout his life Teddy has had several surgeries. He had a nissan put in with feeding tube, ear tubes twice, hernia's fixed, circumcision revision, right hamstring and aductur lenghtened, and spine fusion.
Coming up he will have major right and left hip surgery and eye surgery to fix his roaming eyes. Also he has had several ICU stays due to health issues. He is sadly unable to speak or walk.
He has very little function but you can tell that he enjoys things in life. School is a favorite of his along with church. He isthe big ten years old now. You can follow his journey
on face book at www.facebook.com/prayersfortheodoregrayrhoades.
Saturday, February 16, 2013, was supposed to be a typical busy winter weekend day. It was supposed to be filled with basketball games and a wrestling match for our 8 year old identical twin boys, James & Jacob, but it was not.
On this day, at 6:15 am, Jim suffered a massive Ischemic stroke.
He was rushed to the hospital by ambulance, but soon after arriving at the ER, he was life flighted to Geisinger Danville. Where he would remain for two weeks. His prognosis was unknown and his survival was uncertain at the time.
Jim spent the next 6 weeks in the hospital and a rehab facility. Jim had to learn to sit, stand, and walk all over again. Although the stoke left Jim paralyzed on his entire left side, he pushed himself to where he is today, walking with a cane. He never gave up hope and still prays for continued healing.
Jim was determined to survive for his wife and sons. He has overcome the odds for the severity of the stroke he suffered, due to his faith, family, & friends who have been by his side for over 10 years post stroke.
Jim is a lover of the outdoors, hunting, fishing, and animals. He continues to hunt and fish with the help of his boys and close friends.
He has been involved with sports teams as a coach, weather on the field or in the stands. Jim has been to every soccer & football game for his boys in extreme heat or cold and is their biggest fan in all they do.
Jim continues to pray for healing, guidance, and strength as he navigates his life post stroke.
Pete is thankful for a vacation, not only because of the toll his cancer has taken on him but also because of the toll health issues of other family members have taken on him. His cancer has made it very difficult to get away due to doctors' appointments (three different doctors plus testing) and previous treatment which included multiple pain medications and, for a time, a feeding tube. During treatment Pete endured significant pain, weight loss and loss of stamina. He is slowly getting back into working out to remedy some of these side effects but it is a long road. Before receiving his cancer diagnosis, Pete was, and still is, caregiver to his wife and daughter who have multiple health diagnoses to include Lyme disease, POTS, hEDS (hypermobility disorder), GAD, PTSD and OCD and mycotoxins, as well as to his mother-in-law until her passing. Each day is a struggle for the family not knowing how each person will feel at any given time. Medical costs have eaten up most extra money, including draining the family savings account, until recently when it was discovered the home is infested with mold (which is presenting different symptoms in each family member) and unsafe to live in. Now any extra money, of which there is little, gets split between medical costs and trying to make the house inhabitable again. The past almost 10 years have been very challenging and stressful so Pete deserves this time to just relax and enjoy a place he has visited many times as a kid and loves so much.
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.
Kenzie was a sweet, very happy and active 4 year-old with a huge heart, infectious smile and a big imagination. She loved to run, play, swim, go on the beach and just be a kid. But, that all began to change at just four years young. Kenzie started complaining of lower back pain. She didn’t injure herself so it didn’t make sense, but she was consistent with where her pain was. We took her to her pediatrician and he did an exam and said she fractured her coccyx. This diagnoses came without any x-rays, but just a physical exam. It didn’t make sense that she could have fractured her coccyx as she never fell or had any injury but we trusted the doctor. They told us nothing could be done and we just needed to be patient. Those words “be patient” was what stuck in my head as we watched our baby girl deteriorate.
Kenzies pain, coordination and balance started to deteriorate rapidly. Her pain in her back was so bad that she couldn’t bend over. She no longer was able to sit on the floor to play with her Barbie’s and could barely walk. My husband and I started carrying her everywhere. She couldn’t sneeze or be startled without it causing extreme pain in her back. One Sunday she was sitting on the couch, my husband gently scooped her up to carry her and she screamed and cried in a way we never heard before. We knew something was terribly wrong. We couldn’t move her without her screaming. We took her to the closest urgent care to where they immediately did an x-ray. The doctor said he seen something that was very concerning and took us aside to show us. He urged us to take her immediately to a children’s hospital. He never speculated what he thought it was, but we knew it was concerning. We took her immediately to a Children’s hospital. That’s when everything happened so fast. Before we knew it, our little girl was being sedated for a full body MRI. We were told it should take about an hour. An hour goes by and we still didn’t hear anything. An hour and thirty minutes go by and still nothing. I knew something must be wrong. I knew it in my gut. Finally after two hours, the nurse comes out and tells us the radiologist would like to speak with us. The radiologist doesn’t typically speak with you unless something is wrong. He explained that the MRI showed many abnormalities and they would like to bring our daughter to the emergency room to be admitted. Nobody would tell us anything about these “abnormalities “ and what that meant. We went to the emergency room to be admitted and within minutes Kenzies room was being flooded with doctors. They referred to themselves as the “hemonc” team. I immediately looked at the doctors badge and seen “oncologist” and that’s when I knew what they were suspecting. I told my husband to please call our pastor. My heart was in my stomach. Our pastor arrived very quickly and that’s when they told us they suspected our sweet baby girl has leukemia. They conducted all sorts of tests and everything was pointing to ALL ( Acute lymphocytic leukemia). Her labs were off, the lesions they found, her bone marrow was abnormal, she had severe bone pain and fatigue…all the symptoms she had was pointing to cancer. I remember feeling that I had so many questions, yet couldn’t form a word. I felt immediately broken. Thankfully our pastor was able to be the voice and ask all the questions that we just couldn’t think to ask in that moment. We were admitted to the oncology floor where they told us they were 99% positive she has leukemia and we just need a bone marrow biopsy to confirm it. They had us sign treatment consent forms and explained how fast everything will happen and that treatment is the same across the board. I prayed and prayed and prayed. Kenzie had her bone marrow biopsy and the results came back that it wasn’t leukemia. The doctors were shocked. They said they wanted to do another bone marrow biopsy but in a more riskier area where her lesion was the worst, the sacrum. IR was going to do the biopsy but explained how risky it would be. We agreed to do a second bone marrow biopsy two weeks later. That bone marrow biopsy also came back NO CANCER. We were so relieved and felt like we just won a huge battle. But the question remained, what is wrong with our baby girl? That’s when another team came in and told us Kenzie has chronic recurrent multifocal osteomyelitis. It’s rare, very rare. She’s one in a million rare. It’s very painful and no cure. The way this disease was described to us is that Kenzies immune system is attacking her own body and her bones are eating her bones. Kenzies whole world was just turned upside down as was ours.
Kenzie has lesions all throughout her body, her spine being the worst and most dangerous. Having vertebral lesions puts her at risk for a vertebral collapse. Her sacrum, both right and left iliac, her legs, feet, shoulder, clavicle…all riddled with lesions. She’s been at war with this monster for 2+ years and has made no progress. Her disease is progressing and the only thing we can do is increase her dosage to all her medications and continue to pray.
Some of the things Kenzie suffers from are chronic pain, muscle weakness, walking, neurological issues related to pain, easily fatigues and impairment of daily functioning. Treatments are rough on her and has caused tremendous medical trauma and anxiety. She’s currently on the most aggressive treatment regimen that includes a biologic infusion once a month, bisphosonate infusion every 3 months, chemo drug every week and full body scans every 6 months. This means many hospital visits, needles, IV’s and fear.
We are extremely blessed for the care team that Kenzie has. Her nurses go above and beyond to make her comfortable and try to make her treatments easier.
Let me just tell you about my sweet Kenzie. She is our warrior. She is strong, imaginative, kind, and brave. She loves Jesus and has high spirits. She still loves to run, play, swim, go on the beach and just be a kid. She also loves horses and dreams of one day owning her very own horse. She loves to sing and dance and make videos. She loves to laugh. Her giggles makes my heart so happy and it’s the greatest sound in the world. She absolutely loves to play with her doggie and overall loves family time above anything else. She never ceases to amaze me and will forever be my superhero.
Thank you Beachview Dreams for considering this amazing vacation for our sweet girl.
Finley is 8 years old, in 2nd grade, and lives in Northern NY with his twin sister, Eve, his big brother, Ivan and his Mom and Dad. He has the worlds biggest smile, gives the best hugs, and can climb literally anything!
Finley was diagnosed with Autism when he was three and is currently non-verbal. Finley uses an AAC device to communicate. Autism means something different for everyone, but for Finley, the part of his brain that tells him something is scary or dangerous doesn’t always work, so his family and school staff have to always be near him on high alert. Finley loves the water and is often referred to as a “Beach Baby”. He is kind and loving and we are so thankful to be spending some time in OCNJ.
My name is Monica, I’m 34 years old and a mother to two terrific kids! When I am feeling well I love to spend time with my family relaxing by our pool. At the age of 32 I was diagnosed with stage 3 triple negative invasive ductal carcinoma which had spread into my lymph nodes. I did 6 months of IV chemo, double mastectomy, 6 weeks of radiation and then 6 months of oral chemo. After 5 short months of being in remission, I had found out that my cancer was back. Now diagnosed with stage 4 breast cancer, I found out that it had spread to my bones, brain and liver. I am currently on my third line of chemotherapy treatment, as it seems my cancer is so aggressive and not responding well to chemo. I am hopeful that in the near future I will hear some good news and continue my fight and hopefully get better as each day passes. Thank you so much to Beachview Dreams for allowing me to enjoy some time with my family this summer.
This is our daughter Angelina. She is 14 years old and in general she is a happy little girl who has a great smile that always brightens our day. She has had a lot of health struggles that started even before she was born. We had been trying for years to have a baby with no medical explanations as to why we couldn’t. We had literally just sent for information from Catholic Charities to find out about adopting a child with special needs when I found out I was pregnant with Angelina. It was three months on bed rest with preclampsia and an emergency c section before she even came into the world. She currently attends an MDS classroom with a nurse. She has been diagnosed with non verbal autism, sensory processing disorder, type 1 diabetes, PCOS that required removing a cyst adenoma and luckily benign fibroid tumor 2 years ago. She has a rare chromosome duplication and mitochondrial disorder that she is followed for in Johns Hopkins. Whew! I think I covered everything! Despite all of that she is a resilient and generally very giggly little girl who loves being around other children. We are so grateful to be offered this vacation from Beachview Dreams!
Addison is almost 15 and has 2 amazing sisters, 9 and 11. Addy started struggling right at birth but seemed to meet all the typical milestones, some delayed but not significantly. We went through genetic testing but nothing showed initially. At 4 she started more extensive PT and OT to help her. She was then diagnosed with Cerebral Palsy and Autism. Addison has always been a fighter and worked so hard, her body never stopped and she loved being everywhere, with everyone. She was declining but not rapidly, slowly she was struggling with walking and talking/sounds. We saw specialists, traveled and tried to find anyone that could help us.
At the age of 8 we received a call telling us they found something in her genetic testing. She has an extremely rare degenerative brain disease. Very similar to what we know as ALS but this seems to me more dragged out and in children. She was one of seven when we were diagnosed, now six years later she is one of around 30 children all across the world with this awful debilitating disease. Since our diagnosis we have decided to look at the big picture and focus on quality of life, she is not on this earth for us and we refuse to allow anymore suffering. She is now fully wheelchair bound, has no use of her extremities and is fully g/j tube fed.
Currently she is being followed by Hospice and we continue to work to keep her healthy and comfortable. As a family it is extremely difficult to travel, financially and all the logistics (items needed for addy). We love being together, playing games and just spending time doing things as a family. We are so extremely grateful for this opportunity to have time as a family to enjoy a vacation stress free. We want to thank Beachview Dreams Foundation for granting us this time together.