SHESPEAKS Your Power to Influence

Bon Jovi and the Miracle Named Kylie Jae Monica

Bon Jovi and the Miracle Named Kylie Jae Monica

My love for Bon Jovi has spanned 25 years. In fact, the older I become the greater 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 @SheSpeaksUp in November. At the end of the party I received a tweet declaring someone wanted to share with me their Bon Jovi experience. Trust me. It happens all. the. time. I love these stories. Some of them are downright fun and make me green in envy. This one; this one is different.

Heather, from Ten Kids Two Dogs, shared her story. Heather's story warmed my soul and brought tears of joy and pride at the outcome.

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 a part; but that’s another story!) Heather’s family is from Rumson, New Jersey. In the bordering town of Navesink, live the Bongiovi's, Jon and his wife, Dorthea.

Anyone who has followed Bon Jovi knows that this is a group of men who are charitable. Jon has created the Soul Kitchen and the JBJ Soul Foundation. Dorthea is a supporter and driving force behind many of the charities. In fact, it was Dorthea, Jon’s wife, who reached out to Heather upon hearing, from THE (Bruce) Springsteen's, 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

This is 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, in 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 member of the band signed a guitar from their 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, through their managers, eager to know how Kylie was doing. This continued until a few years ago, when they inquired how Kylie was doing after her stem-cell transplant.

The band, fortunate in talent, together, gave so much to this family to make life with a sick child a little easier. This community of rockers charity did not end there. After a devastating fire, Kylie’s home was rebuilt, had an addition and 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 was done 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 was 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 amazing bunch of rockin’ benefactors.”

Early this year, Oprah’s OWN network aired an episode of Mystery Diagnosis about Kylie, aptly named Kylie Monica’s Miracle.

This isn’t a family that feels sorry for what they've been through.  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 season gives one the ability to look forward, to find hope and above all else, believe in miracles.

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 greatly 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.

 

"We will forever be Paying it Forward for what was done for us. Today, our daughter, who was supposed to die before she turned two. She is now a twelve-year-old in Junior High School. She is on Stage Crew for the school play and was 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 amazing bunch of rockin-benefactors."

Make a Comment

Comment  *
 
 

More stories like this