Touched by the ongoing plight of three young Bermudian women faced with serious medical conditions, a local community group has set an ambitious $100,000 fundraising goal to help offset mounting medical expenses.
Lead organiser Gaynell Hayward-Ceasar said the idea of a Gospel Explosion evolved from what she described as “a burden placed on her heart to help three young ladies as well as their families”.
A strong believer that “charity begins at home”, she felt “it was time to give something back” in the form of financial support to three families.
Proceeds will go to Kelee Darrell, 23, who is stricken with Lupus and needs a kidney transplant, Kevina Santucci, 28, who has Carcinoma of the eye (cancer), and Aquilah Salaam, 28, who has suffered with chronic Sickle Cell Anemia for most of her life. That is until a successful bone marrow transplant made possible by her sister in November last year.
A few quick calls to a group of friends by Ms Hayward-Ceasar was all it took to decide that they had to do something to help. Organising committee members include Judith Hall Bean, Linda Paynter, Verona Darrell, mother of Kelee Darrell, Valerie Leader Furbert, Emily Gail Dill and several others.
Together they have pooled resources with some of Bermuda’s best gospel performers and production crews to host a Gospel Explosion Concert on May 23, 2015, at the New Testament Church Heritage Hall.
Bishop Lloyd Duncan said: “I do believe that this is what the church is there for. We extend our arms to help those who need help, solace, support and encouragement.”
Tickets go on sale on April 10th and donations, for those who want to help, can be made at any HSBC branch to account number 002-193977-011.
Gospel saxophonist and US gospel radio host Tony Smith will lead off a host of local performers, including 11-year-old soloist Lakeirah Cunningham who will be making her concert debut.
Volunteers working behind the scenes include Steve Easton of Just Platinum for audio and Jason Lowe who will be heading up the video presentation side of the show.
Both Aquilah and Kevina are required to remain in the US for a year for ongoing treatment as outpatients grappling with out of pocket expenses due to a cap on their insurance policies. While Aquilah’s bone marrow transplant was deemed successful, the procedure stripped her immune system.
When contacted by Bermuda Real in February, she expressed sincere gratitude for being one of the recipients of the proceeds raised by the upcoming event.
To the organisers she said: “Thank you for putting on this concert for us, it is very much appreciated. I am doing very well, taking one day at a time.”
Diagnosed at the tender age of two with Sickle Cell Anemia, Aquilah was also diagnosed with Avasclar Necrosis in early 2009 – a condition that results in a lack of sufficient blood flow carrying oxygen. It also causes the breakdown and death of bone marrow tissue – one of the side effects of Sickle Cell disorders.
Her condition eventually resulted in two hip replacements before the age of 25. She was hospitalized in early 2010 in the Intensive Care Unit at King Edward VII Memorial Hospital for acute chest syndrome.
Days later Aquilah was airlifted to Johns Hopkins Hospital in Baltimore in critical condition with two large clots in her lungs which also caused an eight-day blank in her memory.
In May 2014, she was hospitalized again for open heart surgery at Brigham and Women’s Hospital to remove a clot that was “the size of a peach” in her heart. “These are just some of the challenges that I have had to face since being diagnosed,” said Aquilah.
Prior to the transplant she was also required to travel every six weeks for a blood exchange to have 80 percent of her blood and replaced with new blood. She opted for the high risk procedure because she felt she had no other choice or chance to live a normal life.
Medical costs for the procedure were estimated to cost $500,000, with another $500,000 allocated for follow up care. Unable to work she is totally dependent on her mother’s insurance policy “which has been raising premiums by 20 percent every year”.
Total claims have been capped at $1,000,000 for the surgery and costs for her recuperation. But she said: “There is so much more that the insurance doesn’t cover.”
Her parents Linda and Norwood Salaam travel back and forth to Boston bi-weekly to lend support despite the cost of airfare and accommodations.
“I have to depend on my parents who are already in financial ruin because of my ongoing medical expenses,” said Aquilah. “Some of the medicine that is needed after the bone marrow transplant is not covered and is estimated to cost thousands of dollars for a week’s supply.
“With my parents help, my out of pocket expenses is estimated to exceed over $50,000. We need your help; any monetary contribution to my medical costs would be appreciated. If you feel uncomfortable in giving cash, a travel voucher would also be welcome.”
Chaplain Kevin Santucci, father of Kevina recalled waking up one night to find his then teenaged daughter’s face “blown out of proportion in the wee hours of the morning”.
“Her symptoms included hearing loss, swollen ear drums, sinus problems and asthma, not to mention the numerous surgeries to try and correct these problems,” he said. “Instead of enjoying her teenaged and young adult years, medications and doctors visits became Kevina’s new hobby.”
But it wasn’t until Kevina’s pregnancy and the birth of her daughter Karis that doctors were able to diagnose Sialodochitis Fibronosa.
“Going back and forth from Johns Hopkins they were able to pinpoint that my random facial swelling, which was my main problem which came from inflamed salivary glands,” said Kevina.
“There is no known cure for this condition which leads me to my current situation. Headaches that were thought to be from my sinus condition finally got my attention when my girlfriend noticed my eye was bulging one mornng on the way to work.”
Her worse fear became a reality when the tumor behind her left eye was discovered. She was flown to Boston in October 2014 to have the tumor removed and was diagnosed with a rare form of cancer following a biopsy.
Sindle Cell Rhabdomyosarcoma is known to affect children from the age of six to sixteen, it is also known to be an aggressive form of cancer in adults.
Despite her condition Kevina said: “It is now my nemesis but my life doesn’t stop here. Pregnancy and the birth of my daughter helped lead the way to finding out how severe my pre-existing condition was, but nothing prepared me for this.
“No matter how bad I feel from chemo or the many medications, I will remain strong! Sure there are times I want to give up but I think of my daughter Karis. She deserves to grow up with her mother there.”
And she prays for the day when her chemotherapy and radiation treatments are over. As of February she had 17 rounds of chemotherapy to complete with a full year of radiation treatments.
“It’s a long time when you think about it but my faith will carry me. I have a three-year-old daughter who needs her mother and she will have me by her side!”
Kevina is the oldest child of Rev Kevin and Karon Santucci, who also have a son – Jonathan Santucci. Kevina’s mother gave up her job to care for her daughter while she continues treatment as an outpatient at Massachusetts General Hospital in Boston.
For Rev Santucci it has been “back and forth” from Bermuda to Boston every three to four weeks to help, or as Kevina’s needs arise; without help from the insurance company.
Due to a financial cap on their policy, transportation back and forth to the hospital is not covered by their insurance and Kevina cannot use public transportation due to her condition.
“The family has not submitted any bills to the insurance company to pay for accommodations and certain medications as yet to see that all monies from the insurance company goes toward Kevina’s hospital care and doctors visits. She has been out of Bermuda two other times for treatment for other sickness issues this annual year,” said Rev Santucci.
“Due to the cost of Kevina’s treatment she will more than likely reach the overseas annual maximum ($1,500,000) before the end of the policy year, April 30, 2015. If the cap is reached, the family will be responsible for the cost of 100 percent of her treatment until her new policy year begins on May 1, 2015.”
As a family he said both he and his wife “have taken a lot on themselves to see that Kevina is given the best possible care for her medical needs”.
Said Rev Santucci: “Remember, if the time should come when you have to make a choice between what is right and what is easy, choose right.”
Both Kelee, the youngest of the three recipients, and her mother Verona Darrell are more than grateful for this fundraising venture.
“All I can say to the local community is thank you for your support, especially at this time of economic stress; we are truly blessed with their generosity,” said Ms Darrell.
“With any type of illness, when you are continuously paying for doctors, medication, overseas consultations, you are glad to know that you have insurance. However, when it comes to doctor visits and medication, it can add up.”
While noting that Kelee’s medication is 80 percent covered, Ms Darrell noted: “When you have to have constant medication refills at times it adds up very quickly.” And as head of a single income household she said the costs not covered by inusrance takes a heavy toll.
“For Kelee’s last flare we had to go away, she was on nine different types of medication, she had to go to the doctor every week for months and my co-pay was approximately $1,200 a month just on meds and doctors. On a single income that’s a large dent in the monthly budget.”
Despite her challenges including three days a week on dialysis for the past three years, Kelee said she was “very honoured to have been chosen to be one of the people that this event is being put on for”.
“I am 23-years-old and have been dealing with the effects of Lupus for the last nine years now. By raising money, this will help me to experience many normal years to come. We are young people and all we want to do is simply make our dreams come true,” she said.
“Having Lupus has definitely given me a great appreciation for life. I cherish every moment and thank God for bringing me this far.”
By Ceola Wilson