BRANFORD, CT — It is a rare disease with no cure. And Branford 11-year-old Meghan Keeney is suffering with it — the word suffering an understatement as complex regional pain syndrome is defined by what its name implies: debilitating pain that does not go away.
The disease is so rare it’s still not a completely understood neurological disorder and fewer than 200,000 Americans are diagnosed with it.
Meghan is one of them. She suffered an injury several weeks ago, but the agonizing pain has remained.
Complex regional pain syndrome (CRPS) is a chronic pain condition that mainly affects the arms, legs, hands and feet, but may involve the entire body and symptoms often begin after an injury with a “continuous, intense pain that is out of proportion to the severity of the injury. The pain gets worse over time and often spreads,” according to the National Institutes of Health.
Anna Silvestro Keeney told Patch that her daughter, a sixth grader at Francis Walsh Intermediate School, has been a dancer since she was just a year old and a competitive dancer with Dance Unlimited. She just also finished her second year of competition with Branford youth cheer leading.
“So that adds to the horribleness of this,” she said.
Meghan sprained her ankle. That was the injury.
“This disease is aggressive and nasty,” Keeney told Patch. “It spreads and it hurts. It is known as the worse pain, worse than childbirth. It is nicknamed ‘The Suicide Disease.’ Some people go as far as to amputate their affected limbs and the pain still doesn’t go away. This all started with a sprained ankle. It’s a mother’s worse nightmare come true.
“She is a kind, compassionate, caring kid and everyone who meets her just loves her. Which is why I can’t comprehend how God could have let this happen to her. I’m so frustrated.”
And as if the horrible pain wasn’t enough, the cost to help her child is exorbitant.
Meghan is going to Hartford Hospital pain treatment center to determine eligibility for Calmare/Scrambler Therapy. Treatments can run up to $1,000 a session and are not covered by insurance. She will need a minimum of 10 sessions if they determine she is responding to the treatment.”
Unable to attend school due to the condition, her family reached out to Patricia Robinson for advice on home schooling options. Robinson was moved to create a GoFundMe to help the family cover the costs of an inpatient hospitalization that she says is not covered by the family’s insurance.
A scholarship for the YMCA’s warm water pool is in the works, Robinson wrote, “to try another way of encouraging that foot movement.”
And Robinson wrote that, “a group of Branford mom’s started a food train. A cooler is being put on the outside of the house for drop off.”
The GoFundMe campaign begun five days ago and a goal of $25,000 was set. As of Wednesday morning, nearly $10,000 in donations have been promised.
“A few weeks ago, she was like any other kid, and today, she is faced with long term hospital stays and treatment. This diagnosis is huge folks! She needs our help,” Robinson wrote on GoFundMe. “Her parents came to me looking for home schooling advice and within a few days things have progressed way beyond that…this is an appeal for help for this family.”
Meghan has an appointment at Boston Children’s Hospital in mid-March.
Anna Silvestro Keeney told Patch that her prayers for her daughter are unceasing.
“I’m praying for her constantly. I took her to my alma mater last week, Sacred Heart Academy, to pray in the chapel. The efforts are being made for the beatification of Mother Clelia Merloni. Meghan wants to go to Sacred Heart terribly and there was just a calling to Mother Clelia I can’t explain. We had been praying to her directly. Then I found out the relic that Sacred Heart has in the chapel was an ankle bone. I drove her up there immediately. I’m praying for a miracle for my baby girl.”
But Silvestro Keeney said, “I am in true awe at how this community has come together for Meghan. I would have never in a million years thought people would care so much for her.”
GoFundMe is a Patch partner.