My love for Bon Jovi has spanned 25 years. The older I become, the more remarkable that love becomes. My Twitter handle, @jonbonjovious, has introduced me to many amazing people. It generates conversations that I imagine would not be ordinary otherwise.
Take the #SSTorani Twitter party hosted by She Speaks. At the end of the party, I received a tweet declaring someone wanted to share their Bon Jovi experience with me. Trust me. It happens all. The. Time. I love these stories. Some of them are downright fun and make me green with envy. This one. This one is different.
From Ten Kids Two Dogs, Heather has a story that, as I read, warmed my soul and brought tears of joy.
Her story begins with Heather in the hospital, having just delivered a son. The woman’s a saint having eight of her children each 11 months apart, but that’s another story! Heather’s family is from Rumson, New Jersey. In the neighboring town of Navesink live Jon Bon Jovi and his wife, Dorthea.
Anyone who has followed Bon Jovi knows that this is a group of charitable men. Jon has created the Soul Kitchen and the JBJ Soul Foundation. Dorthea is a supporter and driving force behind many of the charities. It was Dorthea, Jon’s wife, who reached out to Heather upon hearing of Heather’s daughter, Kylie, who was born with the world’s rarest bone marrow failure disease, Diamond Blackfan Anemia.
Dorthea poured out compassion and shared that the band was playing a concert for charity in June (2000) at Asbury Park Convention Hall. The proceeds would be going to a local food bank, a sick children’s clinic and, they’d like to include Heather’s daughter, Kylie Jae Monica.
29th of June, 2000: Bon Jovi performed at Asbury Park benefit show at Convention Hall to benefit the Valerie Fund, The Food Bank of Monmouth and Ocean Counties, and the Kylie Jae Monica Fund (local organizations); http://asburypark.net
A band that has brought a stadium of thousands to their feet, taken home awards, written hit songs, and been an icon for nearly three decades, and yet, here, at this moment, they remembered their roots and used their talent to help this family.
It didn’t stop at the charity concert that night. Each band member signed a guitar for the CRUSH Tour and auctioned it off for young Kylie Jae. All in all, this band from New Jersey raised $50,000 for Kylie Jae, giving her opportunities she wouldn’t have had without them. It lifted a burden from her parents and gave them all blessings: a custom wheelchair to hold Kylie’s ventilator, suction, and feeding pumps, allowed them to pay medical bills and convert their 15-passenger van to handicap accessible.
Long after the charity concert and the guitar’s auction, the Jersey boys reached out to this family, eager to know how Kylie was doing through their managers. Continued check-ins until a few years ago, when they inquired how Kylie was doing after her stem-cell transplant.
The band rallied their friends, fortunate in talent, who together gave so much to this family to make life with a sick child a little easier. Kylie’s home had an addition, handicap ramps added, and all of Kylie’s 24-hour private nursing was paid for by John Mulhern and Bruce Springsteen.
Heather says, “We will forever be Paying it Forward for what they did for us. Today, our daughter, who was supposed to die before she turned two, is a twelve-year-old in Junior High School. She is on Stage Crew for the school play and chosen as the Student Ambassador for all sixth-graders at her school (the largest intermediate school in New Jersey). She is here today, partly because she was given carte blanche access to specialists out of state because of her fantastic group of rockin’ benefactors.”
Early this year, Oprah’s network aired an episode of Mystery Diagnosis about Kylie, aptly named Kylie Monica”s Miracle.
You can find it here: http://www.thedailyown.com/own-network-%E2%80%93-mystery-diagnosis-%E2%80%93-when-the-body-shuts-down-case-of-kylie-monica-%E2%80%93-diamond-blackfan-anemia-dba
This isn’t a family that feels sorry for themselves. Heather shares, “Our families goal is to inspire others to give to those in need…we created a local foundation called Grateful Giving, and our mission statement is to “teach our children to give in gratitude for what they have been given… to bless others in the ways that they have been blessed.. and to share their love and compassion with those needing comfort and support… “.”
You can learn more about Kylie’s journey, starting in 2003, by visiting www.caringbridge.org/nj/kyliejae. It’s a story that, regardless of the season, gives one the ability to look forward, to find hope, and above all else, believe in miracles.
Heather is one of the most selfless women I have ever met. Recently, a hilarious GoFundMe page was set up by her friends on her behalf.
The Kylie Jae Monica Fund
Kylie Jae Monica is the young daughter of Rumson, NJ police Sgt. Joseph Monica, a member of the force for 15 years. Kylie, ill since birth, is in desperate need of a bone marrow transplant. This fund was set up to assist in defraying the enormous medical costs associated with Kylie’s numerous rare illnesses. The Monica family recently was dealt another devastating blow when their home was significantly damaged in a fire. The family is living in a hotel, waiting for insurance to settle their claim and repair the damage to their home.