Summer 2019 Dreamers!
Dylan, Ryan & Marissa
Dylan, Ryan and Marissa are from Buffalo, New York and all are on the Autism Spectrum Disorder.
Ryan has severe autism and has words, but can not communicate. He loves to look at old photo albums of vacations from years past. Bless his heart, he has no idea how hard traveling is since they have gotten older and the addition of his sister. He can not say "Marissa" so he calls her "Reese." He wants to include Reese on adventures. He has no idea how hard it is financially to afford a trip like this and we feel blessed that our family was chosen for this beautiful gift. Middle brother, Dylan, is witty and his nickname is Silly Dilly. He loves getting creative with artwork, crafts, and building forts with Ryan. Marissa is a fun loving 3 year old that adores her brothers and loves anything pink.
The gift to relax, unwind and feel like a typical family which is being still and enjoy the simple pleasures. These children are the little teachers of their household. His parents are always striving to give them the most typical life they can. It was so easy to stay home in neutral territory and then Ryan fell in love with calendars and wanted to fill it up. That is when his mom realized something. Mom was so involved with researching ways to improve their health and failed at something so simple and natural. FUN.
This trip is so needed for our family. We are so tired and exhausted of the everyday routine and we know the ocean is going to be so relaxing and rejuvenating for us all. Our goal is to come home feeling relaxed and refreshed to tackle the many obstacles of raising 3 children on the spectrum.
Caitlin & Madison
Caitlin (21) and Madison (18) both have a rare genetic condition called Mitochondrial Disease. It is a progressive disease with no known treatment or cure. Their Mitochondria don’t produce enough energy for their body to function which causes their organ systems to fail. They have also been diagnosed with Dysautonomia, POTS, EDS, Gastroparesis, GI Dysmotility, chronic pain and fatigue, along with many other things. They both got sick at age 14 and have been homebound since 9th grade. They both have Ports and receive IV fluids daily. Caitlin is also dependent on a GJ feeding tube. Sometimes they depend on wheelchairs, walkers, or canes to get around. They take up to 50 pills a day just to be able to function. They have a lot of ups and downs, but they take it all in stride and try to remain positive! Both of the girls favorite place to be is the beach and they are so thankful for the Beachview Dreams Foundation for giving them a chance to enjoy a nice and relaxing break!
Julian hasn't had it easy since day 1. He was born 6 weeks premature and spent the first month and a half in the NICU. At 4 months he was diagnosed with NF1 full deletion syndrome, a rare kind of Neurofibromatosis type 1. On top of all the struggles NF1 poses he is at greater risk for an increased number of early onset tumors, learning disabilities, chance of malignancies, and plexiform tumors. He is followed by 10 specialists, receives weekly therapies and frequent blood draws. Twice a year he goes under anesthesia to monitor an optic glioma, a tumor attached to his optic nerve. He works extremely hard to achieve all his milestones and despite his challenges he is a very happy, fun loving boy. His favorite things are playing with his brother, cars, and going to the zoo!
John is a special 21 year old young man. John has low muscle tone and is non verbal. He is on the autism spectrum. He lives at home with his mom, Beth, sister, Jen, and his two dogs Atticus and Scout. John’s father passed away suddenly last year and his passing has had a profound impact on John.
Some of John’s interest include going to the mall to ride the carousel, the park, book reading, and the boardwalk!
He was nominated by a great family friend, Grace, whose sister Lory was a recipient of Beachview Dreams and without her this wonderful opportunity would not be made possible. This opportunity allows John to enjoy the beach and all it has to offer which will greatly help his spirits since he has been sad since his father’s passing. John and his family are forever grateful for this once in a lifetime opportunity to spend a week away to enjoy the beach.
Tabitha is a vivacious 20 year old, which of all life has thrown at her she can still laugh and have a good time. Tabbie has EDS ( Ehlers Danlos Syndrome) which has resulted in 13 fractures and 15 concussions throughout her life. Tab also
has POTS ( Postural Orthostatic Tachycardia Syndrome), Dysautonomia and Syncope along with other several diagnoses. Tabbie is confined to a wheelchair because she faints several times a day, usually with no warning, this is due to to her POTS which makes her blood pressure and pulse fluctuate dramatically.
You donʼt even know what this trip means to her. She has lived her life under a dark cloud and this has given her a ray of sunshine and ocean breezes to look forward to. She is soooooo excited!!!!
Thank you from the bottom of her heart!
Mason is a 14 year old boy with a genetic brain disorder. Due to his genetic brain disorder he is wheelchair bound, non-verbal, and has a seizure disorder. He is a very happy boy and enjoys watching TV, playing with switch toys, playing on his iPad, going to his mommom and poppop's, going outside, and playing with his sister and brother. He has had many medical procedures but last summer was his most difficult procedure. He had spinal fusion surgery to correct severe scoliosis. He had major complications due to the surgery. He was hospitalized for 3 weeks and was in septic shock. CHOP did an amazing job of restoring him back to his normal self but it was a really tough road for him. It’s been several years since Mason has been to the beach and he loves beach. It’s been over 9 years since we had a family vacation that lasted longer than a day or 2. We are so excited to have this opportunity! From the bottom of my heart I would like to thank Beachview Dreams and the Bolgers! This is such an amazing opportunity for our family to have a much needed accessible family vacation.
My name is Alyssa. I am 26 years old and have lived in New Jersey for my entire life. I was born with a disease called Mitochondrial Disease which progressed as I got older, and it has significantly changed the I thought I would lead. Mitochondrial Disease is a genetic disease that occurs when the Mitochondria fail to produce enough energy to sustain the body’s cell, organs, and other body systems. This has caused my stomach and intestines to fail which requires me to need a feeding tube. I also have severe muscle weakness which causes me to need to use a wheelchair.
I have central line to receive hydration and other IV meds. I also have decreased lung function which requires me to need a ventilator to sleep. Mitochondrial Disease also causes me to experience nausea, stomach pain, seizures, body wide neuropathic pain, and severe, debilitating fatigue. Due to having Mito, I also have a secondary illness called Dysautonomia. Dysautonomia causes my blood pressure to drop and my heart to race which makes me get dizzy and pass out. This disease also causes me to have temperature intolerance.
Although I clearly have at lot of health issues, it’s important for me to have people know that there is more to me than just medical conditions and disabilities. I am very creative. I love to to write, have conversations and debates, study Cultural Anthropology, and train dogs. I love to be in nature, and the beach is my happy place. I am a firm believer that everything happens for a reason! This is not the life I would have wished for or could have even ever imagined having, but I am dedicated to having people learn from my trials and tribulations. I am a fierce disability advocate. I also give motivational talks based on lessons I’ve learned through being chronically ill and disabled. My biggest goal in life is to normalize disABILITY.
If you would like to keep up with my journey, follow me on Instagram @findingbeautyinthepain