Summer 2021 Dreamers!
Allivea was born on April 29th 2013. We live in Hilton NY a suburb of Rochester. There were 5 of us: Myself, Stephanie, Her Daddio, Nick, and two sisters Mattie and Sophie. She was diagnosed with a JPA at the young age of 8 months olds. We were told at the time that Allivea’s tumor was “the best brain cancer diagnosis” as most are “curable” for at least 5 years. Looking at Allivea it was difficult for anyone to notice. While at the beginning she had a head tilt and shake due to the nystagmus and tumor pressing on the optic nerve after her biopsy in 2014 those symptoms were gone. She suffered with little symptoms here and there such as failure to thrive, some tics every now and then, high blood pressure, and neuropothy but radiated peace, love, and happiness through it all. Allivea was put on so many different treatments and it seemed that once one started to work it would either stop unexpectedly or it would cause so many other health issues working with so many Dr.’s the team felt the need to switch. Allivea’s last chance at any medication came in the summer of 2017. We had just moved into our new home and while the treatment was so hard on her body, it appeared to be working. While the tumor finally stabilized (let me tell you that it was always growing and sometimes rapidly) the medication was causing so much pain, we could not hold her, snuggle her, or even touch her. This was a symptom that we could not allow to go on as her parents and sisters. We decided we tried all we could regarding medication including chemotherapy, immunotherapy, and even therapies that were not yet FDA approved for brain tumors. We made the difficult decision to move to radiation. We spoke with Dr.s from Boston Children’s and St. Jude’s who all disagreed, but they didn’t know Allivea. They didn’t see that spark in her eyes and the glow in her smile that we saw along with her Dr.’s at Strong Memorial Hospital. Along with her treatment team Allivea endured about 6 weeks of radiation. After, it was unbelievable. We had her back, she was running, dancing, let us hold her, and even walked upstairs to her bedroom (it had been along year of sleeping on recliners with her b/c that is where she felt the best). Allivea loved dance and took tap and ballet. She was on an elite cheer team called Dynamic Elite Charms. She was the “mayor” of her school and knew more people (both kids and adults) then any of us would know in a lifetime. She was the breath of fresh air that we all so desperately needed when we came home from work at night. She saw the good in everyone she met – she gave dandelions as gifts to her bus driver and random people she saw walking down the street. And then with a “routine” scan we found the tumor had metastized. Dr.’s were unable to explain it as Allivea’s “best brain cancer tumor” was nothing of the norm, it was fast growing and it entwined thru her hypothalamus (the biggest reason it could not be removed). It could have been a side effect of the radiation or it could have been so deep within the brain that radiation caused it to come to the surface. Allivea was still happy thru this and told everyone she was “fine” and asked how they were. She called everyone her best friend and told us all how beautiful or handsome we were. Allivea was unable to travel with us and cheer the fall of 2019 due to all of the complications, Dr.’s wanted to keep her close. She was in and out of week or two long hospital stays (we really stayed away from these until 2019) from the end of October through Christmas that year when we were told to start thinking about “end of life”. Nothing a parent wants to hear. Dr.s allowed us to take her on short trips in January with cheer. This is when we thought she had the flu and slipped into a coma. We were in Buffalo NY. I never missed one of Sophie’s competitions (she is also an elite cheerleader) until this weekend. Let me tell you it was hard but the team won national championships that weekend and said they did it for Allivea. Allivea never woke up. She was (after a lot of red tape and begging) transferred back to strong and after three weeks we decided that her little body had endured too much. She passed away peacefully after all life support was stopped (the day before Sophie’s 11th) birthday on Feb 11 2020. While I personally did not want anyone to see her (and it was flu season), Allivea had other plans. We were told Strong PICU had never seen such an amazing send off and there were over 50 family and friends in the waiting room the day she died. It was such an amazing sight to see the support only she created with her radiance. Allivea will forever be remembered as the girl that smiled thru the worst times, the girl who picked wishes and not weeds(dandelions), the girl who’s favorite colors were purple and teal, the one who loved everyone and everything. Her favorite flower is a sunflower and we line our yard with them. She loved Paw Patrol and Forky (she once told the neurology student she was “Trash” b/c that is what Forky says – he thought she was having a psychotic episode). She loved her sisters passions for horses, cheer, and danced and wanted to be just like them. While our family will NEVER be the same we will honor her short life throughout every breath we take.
Joshua, who is 9 years old, is the cutest, most talkative non verbal, easy going sweet boy you can meet. He was born prematurely with multiple medical complications and was diagnosed with Phelan-McDermid Syndrome (PMS) before birth. PMS is a rare genetic condition caused by a deletion or variation on the q arm of chromosome 22. Many individuals diagnosed with PMS including Josh face many medical challenges, such as severe intellectual disability, absent speech, autism spectrum disorder, low muscle tone, feeding difficulties, gastrointestinal conditions, sleep disorder, seizure disorder, and decreased perception of pain. Due to his low muscle tone and cerebral palsy he needs a wheelchair to get around . Despite daily challenges he encounters, Josh is always happy and smiling, he is our sunshine, he makes our family better and stronger. He loves to spend time with his siblings, listen to music, watch Disney shows on his iPad , especially Mickey Mouse, and to be outdoors or going for a ride. Unfortunately, there are times that Josh requires admittance to the hospital due to his medical fragility. We are so grateful to having this awe-inspiring opportunity to enjoy a different kind of adventure; week at the beach, to do nothing more than relax, recharge, enjoy time with each other, but mainly to be able to see Josh at the beach for the first time. We are beyond grateful. Thank you Beachview Dreams Foundations for this life changing one of a kind and mesmerizing opportunity .
Our Sofia was born with Down syndrome and a congenital heart defect . At 4 weeks old she had open heart surgery to repair her heart and she was in the Neonatal intensive care unit for her first 6 weeks of life. She could not eat on her own so we brought her home with an NG tube until we taught her how to feed from a bottle. She is 9 years old now, fiercely independent and the love of our families life! She suffers from severe acid reflux since birth. She also has some behavioral issues because it is hard for her to let us know what is bothering her, if something hurts, etc. She has weekly music, physical, occupational and speech therapy ! She is in 3rd grade with a personal aid and everyone loves her! She has an amazing personality. She loves to act out Disney movies and sing all day long! Katy Perry and Avril Lavigne are her favorites! Our Sofia is happiest in the water and also listening to music. We are so beyond thrilled and grateful for this trip to the beach this summer. Thank you so very much , from the bottom of our hearts!
Matthew is a fun-loving, 15 year old teen boy with Autism. His family has been a strong advocate for Matthew since his diagnosis. Over the years his family has not only been involved in his schooling but have taken him to countless therapies, groups and activities. It has become increasingly more difficult and more stressful for the family as Matthew is in virtual high school, in a life skills class, for over one year due to COVID. The family continues to try to put in place the necessary resources to assist with his future transition goals, but this is becoming increasingly difficult given the current state of the world. Everyday life poses challenges, but the family takes it one day at a time. Matthew enjoys time with his younger brother Max who is in first grade. Prior to COVID Max would accompany Matthew to every therapy, group, etc....and is nothing but supportive to his brother! Born and raised in Philadelphia the family are a huge Philadelphia sports team family. They love everything Eagles, Phillies, 76ers, and Flyers! They are beyond grateful for this opportunity and are looking forward to making memories.
12 year old Maya was diagnosed with Neurofibromatosis (NF) at 20 months old with a benign tumor behind both eyes and into her brain. She has been receiving low-dose chemotherapy at Children’s Hospital of Philadelphia (CHOP) ever since her diagnosis.
In 2011, Maya was first diagnosed with Neurofibromas 1 and an Optic Pathway Glioma (brain tumor). and immediately began weekly low-dose chemotherapy at Children's Hospital of Philadelphia.
In 2013, 2 years of chemo, she had a rare allergic reaction that the hospital never saw before. The chance of this reaction was 4 in 1 million and the Children's Hospital of Philadelphia wrote a paper on Maya’s reaction.
9 years after diagnosis (2020), she has a rare additional glioma grow separate from her main Optic Pathway Glioma. The tumor was not responding to her chemo needed to be removed. At that time last year, there were 84 recorded cases worldwide. She was #85. The surgeon successfully removed the tumor but there was not enough matter to study the tumor.
In early 2021 Maya was able to stop chemo after a 2 year protocol. Just a few weeks after stopping the chemo, her tumor “rebounded” to it’s original size causing neurological deficits leaving her unable to move her right side. Another rare reaction. Stopping chemo was short lived, but Maya fully recovered. She again continues low-dose chemotherapy.
Over the past 10 years, Maya had more than 43 MRIs, 45+ eye exams, 2 IV ports, 1 brain surgery and 4 drug changes. She has been on chemo 8 out of the past 10 years.
Maya also raises funds for her diagnosed group at Children's Hospital of Philadelphia, and she takes toy donations to the Oncology Clinic at CHOP.
Connor is an amazing 13 year old teenager who lives life to the fullest! At the age of 1, we noticed a speech delay and from there followed an occupational therapy delay, a physical therapy delay and social skills delay so we started our journey for answers around the age of 3. We were convinced that Connor was on the autism spectrum and sought the advice from two developmental pediatricians along with a geneticist and were told that he was not on the spectrum. He entered kindergarten and that was when we finally got the autism diagnosis so we thought we had the missing piece to the puzzle. It wasn’t until he academically regressed in 3rd grade that we revisited genetics again and in April of 2019 we were told that Connor has Sanfilippo Syndrome Type IIIC; otherwise known as childhood Alzheimer’s. Sanfilippo Syndrome or MPS IIIC is a rare, terminal illness that causes children to lose all of the skills that they have gained so they will lose their ability to walk, talk, feed themselves, etc. and they usually suffer from seizures and movement disorders and then they lose their battle in their late teens/early 20’s. Once we were given this new diagnosis, our family launched a “Save Connor” campaign (www.saveconnor.com) to raise millions of dollars for the first ever clinical trial for Sanfilippo Syndrome Type IIIC. We can happily say that we’ve hit $1 million to date but that’s also left us exhausted so we were beyond thrilled and so grateful for Beachview Dreams for reaching out and offering us a week long vacation in which we could hang up our fundraising for a few days and enjoy everything that Ocean City, NJ had to offer which just happened to be all of Connor’s favorites…the beach, boardwalk, rides and games, Manco and Manco pizza, mini golf, etc. Thank you, Beachview Dreams, for allowing us to make more memories with Connor because every day with him is truly a gift!!
Elijah, Caleb & Benjamin
We have 3 amazing boys. Benjamin(bottom left picture) is our oldest and is 18. Caleb (upper right picture) is our middle son and is 16. Elijah (Upper left picture) is our youngest, and he is almost 14. All 3 of our boys have a variety of special and medical needs. Our oldest, Benjamin, has juvenile degenerative disc disease in his back as well as kyphosis, which causes a curvature in his spine. He has some other struggles as well. Benjamin is an amazing self-taught artist, musician and cook. He is also an avid video gamer. Our middle son, Caleb, is on the autism spectrum, has developmental delays and has a congenital myopathy. He can walk but his muscles tire easily, and he sometimes needs a wheelchair for longer distance walking. Caleb loves to be funny and tell jokes-he is our family comedian. He also loves video gaming. Elijah, our youngest, has multiple medical & special needs. Elijah has severe developmental delays & severe mainly nonverbal autism. He does have a few words, but is not able to communicate his needs as you or I would. He also has a congenital myopathy, similar to his middle brother. He wears leg braces to help him walk. He can walk a little, but tires very easily, and can only walk for about 5 minutes at a time. He didn't even learn to walk at all until he was almost 4 years old! When Elijah was very young, about 20 months old, his pediatrician discovered a mass in his abdomen, and after much testing, we found that he had a very rare & very large growth in his left kidney called a Multilocular Cystic Nephroma. They had to remove his entire left kidney. That was an extremely scary time for our family. Thankfully, the tumor turned out to be benign, but the kidney still had to be removed as it had stopped being able to function. Elijah also has 2 rare respiratory disorders...tracheobronchomalacia- a long word for airway softening and partial closure & collapse, and atelectasis- another long word that basically means that he has collapse in the air sacs of his lungs as well. He has about 70% lung function, so we take special precautions to make sure he doesn't get sick, as that usually means a trip to the hospital. He uses a pulmonary vest system known as a "shaky vest" that helps him to keep his airways clear so that he is able to fully expand them and breathe better. Elijah has been through multiple surgeries and hospitalizations in his short life, and has a long list of doctors we see on a regular basis, yet he is the strongest child. He never ceases to amaze me! He wears leg braces to help him walk. He can walk a little, but tires very easily, and can only walk for about 5 minutes at a time. He has no safety awareness, so he requires 1 on 1 assistance from his father or I at all times. Things like stairs in a house are very difficult because he has no idea how to safely maneuver them. We even had to sell our 2-floor home because it was unsafe for Elijah, and move into a single level home. Elijah has an amazing smile & laugh, and you cannot help but laugh when you hear him! He loves to eat-French fries and pizza are his 2 favorite foods, and he has a slight addiction to donuts & popsicles, which he eats every day, even when it is cold outside! We are so blessed in being chosen for a beach vacation from Beachview Dreams as it is very difficult for us to travel and stay in traditional hotel rooms due to all of Elijahs needs, and due to the fact that he does not sleep well at night. Elijah has many difficulties that we face throughout the day, as do all of our children, but we do the best we can to get through each day. We have very little time to focus on just being a family due to all of the medical & special needs, and this trip will help us have time to just be a family and have fun and enjoy each other. We are honored to have been chosen and are extremely grateful!