Spencer lives at home with his mother Corey, his father Bruce, his brother Daniel and a dog Pecan. Spencer is like many typical 16-year-old boys. He likes playing baseball and football, watching NASCAR, going to the movies, reading, hanging out with his friends and playing on his I-pod mini. But he is noticeably different in appearance from kids his age. He has Myotubular Myopathy (a form of Muscular Dystrophy). Spencer has a trach, feeding tube and a really cool motorized wheelchair that he uses to get around.
Spencer was born between 31-35 weeks gestation. After he was born he was immediately placed in an incubator. He had low birth weight, clubbed feet, difficulty breathing and eating. After a week in the hospital where he was born, Spencer stopped breathing and the decision was made to transfer him to CHOP. He got a complete work-up, including a muscle biopsy which was sent to a lab in Chicago. The diagnosis was confirmed that he had Myotubular Myopathy. His doctors told us that we should take Spencer home and preserve his quality of life and that they gave him 6-months to live. Corey went right to work; finding out everything she could about MTM, how to care for kids with it, available treatments, etc. We were going to prove the doctors wrong.
Spencer would spend the next year and a half in and out of the hospital due to repeatedly having collapsed lungs. After he coded in July 2002 the determination was made that he would need a trach. Spencer and his mother would spend the next seven weeks in the hospital. She was always by his side. We would both need to learn how to operate the ventilator, change the trach and learn infant CPR. It was at this time we received additional hours of nursing care for Spencer. Having nurses in your house 20 hours per day took a lot of getting used to. At times you feel like you have no privacy and who are these strangers that I am entrusting with my most precious child.
Years and years of therapy would follow. Learning to speak (used sign language for a while) and using his arms and legs would take up most of his days. Eventually his speaking would surpass his use of sign language and he’s been talking ever since. Although Spencer takes nothing by mouth now and has very limited use of his arms and legs, he has learned to make accommodations for these shortcomings.
In 2008 Spencer welcomed a brother, Daniel, and they have been best buddies ever since. They love to hang out, watch movies, and play games together. Daniel is great brother.
Spencer has always attended public school. Central Bucks has been phenomenal. He has a one-to-one that goes with him to all of his classes and a nurse to take care of his medical needs. Spencer will be attending Central Bucks West in the fall as a 10th grader and prouder parents you will not find. He has come a long way from those early days.
None of his successes would have been possible without the dedication and devotion of the nurses and doctors. Although some nurses have come and gone over the years, the commitment and care shown by all has been tremendous. From advice to counseling to training to instruction the nurses take great pride in their care of Spencer and truly delight in his success.
We are all looking forward to some relaxation, beach and boardwalk time. We would like to thank everyone who supports Beachview Dreams. It only through your generosity that vacations like this are possible.
William is a 19 year old happy-go-lucky young man who was diagnosed with acute lymphoblastic leukemia on March 18, 2012. William is in remission, but has had many chemotherapy side effects including avascular necrosis of the hips and shoulders, which is a loss of blood flow to the bone. He undergoes intense physical therapy and uses a walker and wheelchair. William is also diagnosed with intractable epilepsy, Down Syndrome, and obstructive sleep apnea. He has had 4 recent intensive care admissions for aspiration pneumonia and sepsis, and is now fed through a g-tube. He loves spending time with his brother, Patrick, who is graduating this May from Marquette University in Milwaukee, Wisconsin. He attends the Connections program in Naperville, IL, a program for young adults ages 18-21 with developmental delays. He works in the library at 2 local elementary schools and loves his job! In his free time, William loves to play Wii bowling and loves to watch Disney, Pixar, and Marvel movies. He just received a communication device that he is learning to use; his favorite part of the device is telling jokes! Although William lives in Chicago, he was born in Voorhees, New Jersey and loves to visit his family there. William feels so blessed and thankful to have this opportunity to spend time with his family and extended family in one of the happiest places on earth! William is convinced that Megan Bolger and her family are guardian angels. Thank you so much for this phenomenal gift!
Elisa is an eleven year old girl in fifth grade. She was born with a complex rearrangement of three chromosomes, resulting in a duplication of 3q and a deletion of 4q. In everyday terms, this means she deals with many challenges both physical and developmental. She is nonverbal and has significant developmental delay and autism. She has a seizure disorder and relies on multiple medications to control these, as well as medications to help her regulate her emotions and reduce self harm and meltdowns. Elisa has hearing loss in both ears and wears braces full time on her legal for mild cerebral palsy and tight Achilles tendons. She uses a wheelchair for trips, long distances and safety in the community. Elisa eats nothing by mouth and is strictly tube fed. She uses a suction machine and nebulizer as well, and has chronic lung disease.
Through all life's challenges Elisa has maintained a wonderful attitude. She has an absolutely infectious awmse of humor, beautiful smile and a big helping of mischief. Elisa enjoys SuperWhy, Sesame street and playing with her iPad. She adores music, hums and dances and loves to play the piano at school. Elisa enjoys school, swimming in the pool, trips in the car and bus and just having fun. We love her!
Hannah is 13 years old and is wheel chair bound. Following a traumatic delivery Hannah was diagnosed as having Spastic Quadriplegic Cerebral Palsy.
She is non-verbal but uses an ipad for communication At 13 Hannah has had to endure 8 different surgeries so far, th latest just this past Valentines Day. From ear tube and hip dislocations to a spinal rod or tendon lengthening she's experienced more then many adults. Despite all this pain that she has to encounter Hannah is a social butterfly, she loves people. In preschool she was named an Easter Seals Ambassador for the Annual Walk With Me held at the Art Museum. In school and church Hannah is quite popular. She craves and loves all the attention. She has always enjoyed watching her older sisters at cheerleading competitions. Now she has been cheering for 2 years with the BYC Spirit, a special needs cheer team here in PA. At home Hannah is cared for soley by mom and Dad , her 2 big sisters and new niece. Hannah has only been to the ocean on day trips with her family. Due to her wheelchair we just haven't made the trip to the beach even though she absolutely loves the water. Hannah is a fish. In the water she is free and just like everyone else. We hope her week here will allow her to really experience the beach and maybe even add a new hermit crab to her collection.
Shaelin is a 20 year old identical twin who has Cerebral Palsy due to premature birth. She loves to talk and sing. She is currently auditioning to sing in her church worship team. Taylor Swift is her favorite singer, and she hopes to meet her at her next concert.
She uses a power wheel chair most of the time to get around and sometimes she uses a walker. Her vocational school is sending her out on jobs in the community, like being a receptionist at the local Intermediate Unit, and working in a library in a school next door to her school.
Shaelin participates in Acting Without Boundaries, an acting group that produces musicals and includes people with physical disabilities. It is based in Haverford, PA. Last year the group performed The Jungle Book.
Shaelin lives at home with her mom and cat named Clara.
I am Ajike and I am 8 years old. I need to take medication twice a day to keep my immune system strong. I live with my mommy and daddy and one older sister and one younger brother. "I am an African Queen." I love to dance, do gymnastics, and play outside, especially playing jump rope. I am in the 2nd grade at school and my favorite class is gym and art. I like to go shopping and as a special treat, so out to a restaurant with my family.
My favorite foods are macaroni and cheese, lasagna, meatballs, and chocolate cake. My mom makes me banana and strawberry smoothies which are great!
I am very excited about going to the beach with my family.
This is Austin. He is 23 and has Cerebral Palsy, is cortically visually impaired, and has a seizure disorder. He doesn't walk or sit up or do much on his own and has had several surgeries - some that got complicated and life-threatening but through it all, his loving personality and contagious smile still remained. He lives at home with his mom who is his 24/7 caregiver and as hectic as it might get times she wouldn't change that for the world. "He is my hero and has made me realize it's the simple things in life that matter and that life is too short so get out there and make the best of it." He is excited as we all are and blessed to get this opportunity to have a beach vacation with him. We Can't Wait!!
Chase is 3 years old and has Quad Cerebral Palsy. He had a rough start to life and was not breathing when he was born, which caused his brain to be without oxygen. This is called Hypoxic Ischemic Encephalopathy. He is non ambulatory, non verbal, and takes most of his nutrition through a feeding tube. He travels to many doctors appointments with his mom and dad and the doctors at CHOP take great care of him. He has many therapies through the week and is always busy with one appointment or another. Despite his challenges he has the BEST smile and laugh and is one happy little guy. He loves Daniel Tiger, Mickey Mouse, and bubbles. We are so excited to be able to take a much needed vacation and have this wonderful opportunity to have an entire week of fun with no doctors or therapists!!
Thank you so much for giving us this opportunity. We are looking forward to time away and being together as a family.
Hector is 17 years old. He lives at home with his parents and little (BIG) sister. Hector attends St John of God school during the week. Hector has many disabilities and has not been given a diagnosis. He is suffers from epilepsy, autism, ADHD, Non-verbal, vision impair, incontinence, PICA and needs all his daily living needs met by others. As his mom would say he is diagnosed with Intellectual Disability Unlike many children, Hector was born full term with no complications and came home afterwards. By the time he was 8 months old I notice he had cataracts and he underwent 3 cataracts surgeries with last one ending up with his 1st seizure. Life for Hector had continue normal except for some slight development delay in his milestones. At the age of 2, everything went downhill. Hector starting by a having a seizure that admitted him into the hospital for several weeks. Hector would have dozens of seizures throughout the day and could not be control. After being discharge with numerous attempts and different medications, he was admitted to Weisman Rehab for children where he there for month. Hector needed PT, OT and speech therapy and eventually starting attending there daycare center. Hector progress slowly and was discharge at 5 were he then attended DHS regional school. He has slowly progress the years but it is definitely a struggle for him. On a daily basis, Hector wears mafos to assistance with walking, using a wheelchair on longer outings and unfamiliar surroundings. Helmet to protect him from any falls. At home hector is confine in a Rifton chair.
Hector is happiest when he is eating. Hector loves music I can tell, even though he can't say I know he does. Taylor Swift & classical music is what his school would say. Hector has had the help of a home health aide for the past 11years while his parents go to work to provide for his needs. His little (BIG) sis Jeilani who is 9 has extremely helpful and has a heart of gold when it comes to her brother!
Hector has never experience a vacation because he attends school almost all year long but when he's off during summer he at home with a sitter. I've taken Hector to local parks, lots of special needs events provided by Camp variety of Philadelphia. We do sensory films, trampoline parks. He attends Camp Elk Moore every summer for one week. I love this camp! There are great with kids with special needs.
Currently Hector is in 11th grade. He been getting ABA services at home and he has been able attend more social outings with the help of Brett DaNovi & Assoc.
This vacation is the yet another blessing for our family. We are excited to spend our 1st family vacation here at Beachview Dreams!
Hector is surrounded by close family and friends especially biggest supporters & fans on Facebook! We thank God each day that he is a part of their lives and will continue to provide him with the best possible care and love.
Shawn is an amazing 7 year old. He was born with spina bifida and hydrocephalus. He was diagnosed with myelomeningocele and had surgery to have his back closed the day after he was born. Due to hydrocephalus, Shawn has two v/p shunts. The first was placed seven days after birth, and because of multiple malfunctions with the 1st shunt, a second was placed within two months. Shawn had multiple shunt revisions for the first two years of his life. He has also had hip and tendon surgery. Shawn later developed multiple minor diagnosis of Autism, feeding disorder, chiari malformation, scoliosis to name a few. He is wheelchair bound but currently uses RGO's and a walker for support and assistance in walking. Although Shawn has had multiple surgeries, hospital visits and obstacles, he has still managed to be a strong, smart, cheerful and loving young boy in great spirits. Shawn loves Disney's Cars, NASCAR and Avengers (especially Captain America).
Shawn and his Mom definitely want to take the time to thank Beachview Dreams and all of their supporters for making an opportunity like this available to us.
Kymarie is 12 years old and has Primordial Dwarfism. She was born full term weighing 2lb and 14oz. She was diagnosed with Primordial Dwarfism at the age of 2 years old. Kymarie currently weighs 32 lb and is 3 1/2 feet tall. Kymarie is a very happy and sociable child and loves to make friends and do "typical" pre-teen (as she calls herself) things. She loves to make others smile and tries her best to make sure everyone is happy. Kymarie loves her family and is always eager to help and make sure everyone is o.k! Kymarie will be going to middle school this year and is very excited to start. Kymarie has been a blessing to our family and has brought us lots of happiness!
This will be Kymarie's second time going to the beach, and she will defiantly enjoy her time there! Thank you very much for giving her this opportunity to have this experience!