In 2005, Larry’s Mott Hospital surgeons arranged for us to take him to Johns Hopkins in Baltimore Maryland for 3 innovative and very crucial surgeries that were hopefully going to close Larry’s pelvis and connect his bladder to his body. Larry’s complex medical issues included (but not limited to) being born with no pubic bone, a 14 cm gap in front, no abdominal wall, no colon, and his bladder was in two halves and on the outside of his body and not functioning, and all of his organs except his heart and lungs, were on the outside of his body.
The hopes were that the surgeons at Hopkins would be able to fracture his pelvis, attach an external fixator to it, and force close his pelvis. Then attach a titanium plate in front to hold everything together and connect the two halves of his bladder, and connect the bladder to his utterers. This was excruciatingly painful and complicated and caused many infections for Larry. For 3 months he lay flat on his back in his hospital bed, with 30 pound weights pulling on his legs to keep him from moving, and in keep his body in traction.
Once healed, this would enable his surgeons at Mott to close up Larry’s abdominal wall defect, attach cadaver tissue and mesh and I don’t remember what else, to close up his stomach, anchoring everything to his newly closed pelvis. Unfortunately, when Hopkins attached the titanium plate, they put the screws through his newly connected bladder, causing massive infection, and thus---once back in Ann Arbor, several months later, his bladder had to be completely removed, resulting in Larry having ostomies for both urine and stool.
In other words---it didn’t work. But that is a story for another day.
Gosh, it has been years since I brought all of this us. The PTSD is hitting me.
Larry jr and I travelled to Hopkins in May of 2006, and were there for 3 months. He had his 5th birthday while in that hospital. At home, my husband was recovering from having his entire colon removed. He was extremely ill. Larry Sr and severe ulcerative colitis, and in the fall of 2005, had his entire colon, which had cancerous polyps, removed. He was extremely ill. At that time, he had not been back to work because of his long recovery, for about 7 months. He didn’t return to work until that following September, nearly a full year after his colon removal.
I was heading to Hopkins with my very ill son, leaving behind my very ill husband and 5 children ranging in age from 9 years old to 18.
That is when we met Ernestina.
Ernestina Parravano, also known as the Angel of Ann Arbor, and Grandma Tina to her adopted grandchildren, of which Larry Jr was one, was truly the angel of Ann Arbor and Mott Hospital. A social worker at Mott connected us to Grandma Tina when Larry’s Hopkins trip was being put into motion. It goes without saying that with a sick husband, sick child and 6 children, we were flat broke. Ernestina out of nowhere covered Larry Jr and my flights. Even though I stayed with Larry Jr at Johns Hopkins including sleeping next to his bed, I had a room at the Children’s House across the street to take showers and keep all of our things we would need for 3 months. This was not free. I did get a discount, but we were there for over 3 months. And the final bill was around $2000. She covered that too. Our flights home had to be changed as Larry hospital release date kept being extended. She covered the fees for that.
No questions asked. She trusted us. She knew this was necessary and we had no other hope except through her.
Grandma Tina remained our friend until her death in the fall of 2010. Her family contacted us when she died and asked us to attend her funeral. Unfortunately, Larry jr was extremely ill, had nearly died and was currently in the PICU at Mott. Larry Sr and I snuck away for a bit, leaving him in the care of his awesome nurses and attended her funeral.
Grandma Tina changed so many lives. Oh, she was so full of love. She spoke several languages, and had a very thick Italian accent. She lived an extraordinary and interesting life. She received many awards and accolades at Mott for all she did for “her babies.”
To this day, I have a voice mail saved to my phone from July of 2007 from her. She called us frequently. Always saying---“And how is the baby Larry? How is the lovely family? Oh, I love you all so much. I love the Katie and the Steven and the John and the Michael and the Molly. And I love you Kathy. And I love the baby Larry…And how is the husband? Oh I love him.”
I wish so much that through Larry Jr’s nonprofit, we can make an impact like Grandma Tina did for us. That we can spread hope, and joy and love. I know hopelessness. I know the need of families in desperate circumstances.
Larry Jr has been through unimaginable trauma and suffering. The medical issues he currently goes through are minimal compared to the state of his health between 2001 and 2015, when he nearly died multiple times. When the doctors had us call our family in many times, to say goodbye to him. When we were so very broke, we had no money. None. I used to “over write” checks at VG’s grocery store so I would have 20 bucks to put in the gas tank. Our electricity would get shut off. My husband would literally have to ride a bike to work, 7 miles, because our cars quit running. We lost our last house to foreclosure.
We worked hard. We cut costs. We were thrifty, and did not run up credit cards, I cut coupons, I sucked up my pride and went to our church basement to get free groceries. Our children were very good students, had nice friends, played their sports and danced and volunteered whenever needed. They were such good kids. They tried so hard for us, and wanted so bad to make things easier.
All that suffering Larry Jr went through has got to be for a reason. The suffering our children went through at the near death of Larry jr and my husband, during their childhoods, caused them so much trauma. It has to make sense to me.
I believe that our son Larry Jr, is still here, because he gives others hope. And I know that it is because Grandma Tina gave him hope. She loved him. She insisted he call her Grandma. She helped our family. She was truly an angel and knew when to call and say how much she “loved the Kathy and the Larry and all the rest of the lovely, joyful family!”
Sometimes hope is all you have.
Larry jr is such a kind young adult. He remembers Grandma Tina. He still has the red fire engine whistle she gave to him. He is kind and joyful. He tries very hard to be encouraging and spread hope. He loves everyone.
This nonprofit means so much to Larry Jr. and our family. We are finally in a better place. It sure helps that 5 of those 6 kids are now adults buying and inhaling their own mass quantities of groceries. Haha. We have been helped by friends, family and even strangers. And I always say, that without that help, we would not have made it. We are grateful. And our goal is to help families just like ours.
Please spread the mission of Larry’s nonprofit. Larry has raised so much money! And he wants to help families at Mott Hospital who have a loved one with complex medical issues just like Ernestina helped us in 2006. Please share our website and information so families in need can reach out to us for help. We understand. If you are able, please donate so we can continue to help others as much as possible.
Our goal is to have a 5K and we are currently negotiating with a possible nonprofit partner to do this. Larry’s goal is to make $50,000 a year. We are currently at approx. $23,000. If we can get this 5K in motion, I know he can reach his goal, every year.
Larry has been busy. His feet are so much better. He still has some wounds, but wound care at Mott came up with some great collagen type dressings that are helping. He currently has pneumonia, but he’s been down that road before. And he will get better. He is seeing his spina bifida doctor at Boston Children’s for a follow up in October.
We have a banner for Larry’s nonprofit at Pinckney High School Pirate Football Stadium, the goal being to reach families who need help. And we have business cards for all our board! First Impression Printing and Marketing in Howell, gave us a massive deal and sponsored Larry the costs of these. They do so much for many of the nonprofits in our community. Thank you to them and to Pinckney Football for hanging Larry’s banner!
Larry Jr and my husband and I were part of a photo shoot in which Larry Jr played the part of “the patient” and we played “the parents” at Mott for the Gifts of Art program. It was so fun to be giggling and laughing playing the part of a sick family. Sounds nuts I know. But you have to understand, it was just so….different. For Larry to be fake sick. But it was pretty fun and the group of people were really cool.
He and my husband also helped Team Impact make a video that they showed at their big gala this year. Larry was so happy to see Kiernan and his Team Impact friends.
Carlee McDott, an Instagram friend of Larry’s, did a really cool thing for her 38th birthday month. Every day she donated $38 to a nonprofit of her choice, and picked Larry’s nonprofit. Also donating many really nice children’s books for him to take up to Mott to give to Child and Family life to share with patients. Thank you so much Carlee!
Larry attended Michigan football’s home opener thank you to his friend and board director, Grant! Go blue! And he attended the Godzilla Convention with his family. So much fun! Yes, there is a convention for we-nerds who love Godzilla.
Before this pneumonia hit, we volunteered for the Arc Livingston at a homerun derby for individuals with disabilities. Larry loved fielding baseballs and tossing them to the pitcher. It was an absolutely beautiful night full of love and camaraderie.
We love our nonprofits.
We hope all of you are doing well. Please share Larry’s nonprofit with others so we can help kiddos at Mott Hospital and their families. Please spread joy and remember to volunteer! Volunteering is so much fun. You meet so many interesting and happy people. It is such a tremendously good feeling. And thank you Grandma Tina, we still remember you, we never forget you, and we love love love love you.