Fundraisers planned for Brooks 5-year-old, family

Price of medicine skyrockets
By Fran Gonzalez | Apr 05, 2018
Photo by: Fran Gonzalez The Ripley family is raising funds to to be able to continue administering costly medication to their son.

Brooks — Bentley Ripley has been nothing short of a miracle.

years old, he has been in and out of hospitals all his life. Most recently he's been diagnosed with a rare condition called Lymphangiomatosis — in layman's terms: abnormal growths or cysts in the lymphatic system.

While it is considered a benign condition, it tends to invade organs and cause damage in the bones and lungs. When the disease occurs in the lungs, it is most aggressive in young children.

Bentley's family was devastated when, at a scheduled 20-week fetal anatomy ultrasound, doctors discovered something was not quite right.

"Do you see this spot here?" asked the ultrasound tech, Bentley's family recalled.

The doctor later explained the spot stuck to the side of their baby's head was called a Cystic Hygroma and that it could quite possibly grow, take over the space in the womb and kill the baby or cause issues later on. The couple were told it might be a good idea to abort their child.

However, the family pushed onward.

They were referred to Massachusetts General Hospital and LeeAnna Ripley was scheduled for a C-section at 37 weeks.

Bentley was born Oct. 3, 2012, and taken directly into surgery. He had large masses of tissue removed from the back and right sides of his head. He had many Hygromas removed, but many had to stay.

While the family stayed at the hospital for two weeks, Bentley was enrolled in MaineCare.

Just before Halloween 2012, they had to rush Bentley back to Boston where they discovered he would need to have another surgery to remove a cyst that was blocking his airway.

LeeAnna Ripley said, "Things calmed down, however, Travis (Bentley's father) and I had to give up our jobs and move in with family because we had used up all of our savings and spent our limits on our credit cards trying to stay afloat in Maine and live in Massachusetts."

About a week before Christmas the immunology department in Boston called about Bentley's T-cells. He was not producing them on his own; the caller urged the Ripleys to come down for an infusion of immunoglobulin. The day after Christmas, they were at the hospital in Boston again.

Every few months they made the trip to Boston to meet with their doctor in his office. Bentley began sclero therapy treatments, a procedure using ultrasound and doxycycline in an operating room. The treatments were repeated about every six months for two years, until they no longer seemed to be working.

Bentley had MRIs to check for changes that might have been happening after these treatments.

In 2013, LeeAnna Ripley began working for Maine General in Augusta as a CNA. Her job provided medical insurance, and MaineCare was still a secondary insurance option for the family.

Bentley came down with an extremely high fever in 2016 and had to go to the emergency department at Maine Medical Center. It was determined Bentley's cysts had become infected, causing the fever.

The Ripleys decided to go back to Boston and were referred to Dr. Ebb, a specialist in pediatric hematology. He diagnosed Bentley with Lymphangiomatosis in February 2017.

Soon after, Travis Ripley started a new job and the family no longer qualified for secondary insurance through MaineCare.

Bentley's most recent MRI showed significant bone involvement and a large cyst on the inner chest that will be difficult to treat. He was started on an oral drug called rapamycin. This worked for almost two months before Bentley began to get migraine headaches and mood swings.

The only other option, according to the family, is an experimental drug, Pegasys®, which Bentley began using in fall 2017. He is expected to receive injections once a week, for as along as his body can tolerate it.

The Ripleys received the prescription through mail-order and were not charged a co-pay the first few times it was filled in 2017.

However, when LeeAnna Ripley went to the pharmacy to fill the prescription Jan. 26, she learned the pharmacy was asking for a $2,664 co-pay. All staff could offer was a payment plan, with the first payment made that day — a minimum of $1,500.

She decided to wait until February, because their insurance was changing. Travis Ripley called in the prescription and was told the co-pay was $2,460.

At this point, the family does not qualify for income-based assistance programs. The drug manufacturer does not offer discount coupons for this particular medication, the Ripleys said.

Travis Ripley called about placing Bentley on MaineCare as a secondary insurance but was told it also is income-based.

The family applied to get disability benefits but were told Bentley does not qualify because he is not disabled. The insurance company covers only 80 percent of the cost of his medication, which leaves the family to come up with almost $2,500 out-of-pocket every three months.

"For a long time we kept it to ourselves — it became overwhelming," Travis Ripley said.

The family is now asking for help.

According to LeeAnna Ripley, "If anyone deserves the chance to keep going, it is Bentley. He is a fighter."

The family's short-term goal is to raise money to continue with Bentley's current prescription. Their long-term goal is to continue fundraising for other families who need help paying for expensive medical treatments by using the tools and resources that they've gathered from their current situation.

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