$92,314 of $75,000 goal
As many of you know, the youngest member of our family, MaryEllen's 11-month-old son Oakley, was born last May with several heart defects, including a double outlet right ventricle where his aorta and the pulmonary arteries are coming out of the same right ventricle. He also has a significant hole between the right and left ventricles as well as an enlarged pulmonary artery. Shortly after birth, Oakley had his first heart surgery where a stint was put on his artery, which was a temporary fix to give more time for his heart to grow bigger and stronger. He has now outgrown this stint and underwent his second open heart corrective surgery on May 25th at Boston Children's Hospital (a few days shy of his 1st birthday on May 31) in order to reroute the arteries and patch the hole. Early signs are that the surgery was successful and he is now beginning a long recovery process which will include an extended stay at the hospital for up to a month. It has been an emotional and trying time for MaryEllen and her husband Shant, but they are doing their best to remain optimistic and praying for the best possible outcome.
In response to the outpour of concern from many family and friends asking "How can I help?" knowing the amount of surgical expenses from little Oakley's first surgery still piling up and the inevitable amount of bills that will continue to come in that are not covered by insurance, we wanted to provide you all with this path to direct your love and support.
In addition to your donation, we would love to offer you the opportunity to purchase "Oakley's Team" T-shirts to show your loving support in a fun and more visual way. If you are interested, please contact Johnny Gianino Jr. at 617-922-5292 or email@example.com .
Our family continues to be overwhelmed by all the love and support directed towards Oakley and his family over the past year, and we ask that you please continue to keep them in your thoughts and prayers. Your contribution as a member of “Oakley’s Team” will go a long way to ensure this very difficult health and financial situation has the best possible outcome. Welcome to Oakley's Team!
With thankful hearts,
The Gianino Family
Not a day goes by where we are not asked about Oakley’s health whether it be by a family member, a friend, an acquaintance or someone we have come to know simply because of Oakley and his/our journey. As parents, there are no words to describe how incredible it is to know that those rallying for your child goes far beyond those who we may know by name or even face and how comforting it feels to be surrounded by so much warmth, support and heart. We truly are forever indebted to each and every one of you. Your thoughtful messages, well wishes, and prayers have continued to fuel us day in and day out.
This past week, Oakley had his three-month post-op appointment here in New York. His cardiologist was more than pleased with his progress, how much he has grown and said that Oakley’s surgeon, Dr. Emani, did a “phenomenal job” adding that biventricular repairs are truly a “work of art.” As a result, should we not notice any of the warning signs indicating heart failure, we do not have to go back for another three months! Also last week, we had Oakley’s fifteen-month wellness visit and learned that he continues to hit all of his developmental milestones. We could not be more thankful for all of the positive feedback and the amazing team of doctors that we are surrounded by for Oakley.
Oakley continues to keep us on our toes, has more energy than all of us combined (it feels like at times), has an awesome sense of humor, gets a kick out of chasing his older sister, Dalia and we absolutely LOVE and feel fortunate to be able to watch him grow into the person he is meant to be!
Mary Ellen, Shant, Dalia and Oakley
As for Oakley’s progress, he is six weeks post-op and this heart warrior is officially FREE from restrictions!! During his recent 1 year pediatric appointment, we learned that after being in the 15% for some time over the past year, Oakley has jumped up into the 70s-80s percentile for weight and height, while his noggin continues to hold steady in the 90s and, developmentally speaking, he is hitting ALL of his milestones!!
Shant had a Happy Father's Day when Oakley took his first few steps and since then he has been walking all over the place with a HUGE grin on his face!! He says, Dada, Mama, Dalia, ball, Hi, Bye, duck etc. and can identify cars, trains, his bottle, fans, and LOVES making different noises, stacking blocks, flipping through books and playing with his sister, Dalia! All in all, we could not be more proud of him and his progress!!
Thank YOU ALL for continuing to be part of Oakley’s story, our story...your support, love, beautifully written notes and messages and continued thoughts and prayers will forever be cherished!
Shant, Mary Ellen, Dalia and Oakley
How a life can change in just a short amount of time! A little over 2 weeks ago, this courageous little boy underwent a life-changing and life-giving heart surgery.
Prior to Oakley’s surgeries, he struggled with the basics- he had trouble eating, his breathing was labored, and he was often restless and not able to sleep. Given his diagnosis, it was also important for us to be mindful of the signs of heart failure (i.e., bluing of the skin or loss of consciousness) which could have happened at any moment. As a parent, all the above was nerve-wracking enough, but the thought of our child, our new baby, having to endure any surgery was something that made things even harder to digest. Thankfully, his condition was operable, and he was able to show us how strong and resilient he truly is.
Almost immediately following this most recent surgery, we have noticed nothing but progress. His energy level is up, he is sleeping better than ever before, smiling more than he ever has, and overall seems more content. His doctors anticipated his hospital stay would be anywhere from two weeks to a month. But as you may be aware by now, he was discharged from the hospital just five days post-surgery! He was able to enjoy his first birthday at his Nanny and Pops’ house surrounded by family and had the joy of smashing his first cake! He has been zooming up the stairs, has been to parks, a museum, his cousins’ houses, etc. Aside from post-surgical restrictions, he has been given free reign by his doctors to climb stairs, practice walking, play with his sister Dalia, and do most things that a one-year-old does. We are just following his lead. This past week, we went to his post-op visit and the three doctors who checked him all reported that his murmur is GONE, his incision looks great, and they do not need to see him for another THREE MONTHS! It has truly been a miracle to see how amazing he is doing and how much more life he really is living
When we found out about Oakley’s diagnosis, we did some research to find the best hospital to care for him, and it was not a surprise that Boston Children’s Hospital was number one for his specific repair. After speaking with a number of family members, friends, family friends and friends of friends, we made a number of connections with Boston Children’s which led us to our incomparable team of cardiologists and our surgeon who would continue to care for Oakley and give him the best possible chance at living a “normal” life.
When we made the decision to bring Oakley to Boston Children’s Hospital, we did so knowing that despite what would be covered by insurance, we would be inheriting a large debt. But, from the very beginning, we knew that we would never let money get in the way of providing Oakley with the best care he could possibly get, and whatever debt amassed, we always said “We will figure it out... There will be a way.” Well, you have ALL provided and continue to provide “that WAY.”
Two nights before Oakley’s second surgery, our family informed us that a fundraiser for Oakley had been started to help alleviate some of the financial burden. We were overcome with mixed emotions. Although we were/are grateful for the wish to help and the willingness to spread the word by asking others to help in such a way, we were also hesitant. For us, we have always been uneasy accepting a few dollars from anyone but, needless to say, this was going to be more than just a few dollars. After a lengthy conversation, our family eased our hesitance and made us understand that this was not started out of sympathy for us, but to provide Oakley and us the opportunity to hit the ground running post surgeries without having this dark cloud, so to speak, lingering over our heads. This was also set-up in response to many of you asking, “What can we do to help?” They made us realize that one of the hardest things in life is showing that you could be vulnerable. Yet sometimes, revealing your vulnerability could inspire others to come together for a great cause, express their love and support, and even come forward to ask for help themselves.
We cannot thank Oakley’s Team enough or even begin to describe how grateful and indebted we are to ALL of you. For those who donated, for those who spread or are spreading the word, for those who would love to donate if they could, for those who continue to hold our family in your thoughts and prayers, for those who wear your support via the “Oakley’s Team” shirts and those who have shown their support and love in other ways, THANK YOU. We TRULY are and feel blessed!
Shant, Mary Ellen, Dalia and Oakley
Happiest of F1RST Birthdays to this little heart warrior and the one who has definitely lived up to his namesake!! A year ago yesterday, we welcomed Oakley Anthony into the world. A world that would greet him with great obstacles he would have no choice but to overcome in order to be with us today. Even after two major heart surgeries, a few hospital stays, seemingly endless doctors’ appointments, medications, months of physical therapy, etc., his silly, loving, playful, and zestful personality continues to shine through and we are in awe of his strength and resilience. As many of you are aware, this past Friday, May 25th, Oakley underwent a complex biventricular repair that should've kept him in the hospital anywhere from two weeks to a month. But, thanks to the amazing team of doctors at NYU Langone Fink, Boston Children's Hospital, the overwhelming support from family and friends- now and forever to be known as “Oakley's Team”- and one determined little boy who refuses to let anything keep him down, Oakley's surgery (and hopefully last) was a complete success. And, in true Oakley fashion, he defied all odds and made it home just in time to celebrate his F1RST BIRTHDAY! It has been amazing to witness the impact of Oakley’s life on the lives of others (that extends beyond those who we may know by name), who have heard Oakley’s story and have been inspired to say a prayer, send their well wishes, spread the word to others and/or those who have chosen to support him and us in other ways. Thank you, THANK you, THANK YOU, to all of our family, friends, and new friends, who have supported Oakley and, in turn, have made this journey more bearable for all of us. We are deeply humbled and appreciative of our EXRAORDINARY tribe.
We love you all,
Shant, Mary Ellen, Dalia & Oakley