Janet, left, and Tara Stapleton keep a watchful eye over 15-month-old Harper Marie Stapleton at the Children's Hospital of Philadelphia. / Special to the Sun Times via news-press.com
Mike and Janet Stapleton are confronted with a situation that no grandparent wants to face.
The long-time Marco Island residents' 15-month-old granddaughter Harper Marie Stapleton has been tentatively diagnosed with the rare and potentially fatal neurological autoimmune disease Anti-NMDA receptor encephalitis.
Anti-NMDA receptor encephalitis was identified in 2007 and the disorder causes severe neurological symptoms including hallucinations, psychosis and seizures.
The disorder was discovered in late January and after being initially treated at Baltimore City Hospital, the child was transferred to the Children's Hospital of Philadelphia, where she is on a respirator, has a feeding tube and is being treated with multiple drugs.
Harper and her parents, Billy and Tara Stapleton, live in Baltimore, where Billy Stapleton is a high school teacher and Tara Stapleton is a certified nursing assistant.
"It (Harper's condition) changes every day, a little bit good, a little bit bad," said Mike Stapleton. "Every day there's good and bad. What we do know is Billy and Tara have to be in this for the long term."
Mike Stapleton said recovery can take as much as two years and that while his son has a good medical insurance plan, the couple is facing astronomical medical bills from Harper's treatment and recovery.
Compounding their plight is the fact Tara Stapleton will have to stop working while she cares for her daughter.
The specter of crushing medical debt for their son and daughter-in-law has led friends of the Stapletons to establish a fund to help them cope with the loss of income and the medical bills that are part of long-term illness.
"The Stapleton Family Fund" is registered with the state of Florida. The Mutual of Omaha Bank is handling the fund.
"We're reaching out to the community to help Billy and Tara so that they don't lose their house," said Mike Stapleton.The donations "will literally replace her (Tara's) income so she can care for their baby."
Mike Stapleton said doctors are working to confirm their tentative diagnosis and are awaiting the results of a spinal fluid test being conducted at the Mayo Clinic in Rochester, Minn.
It takes four weeks for a determination to be made and the results received, Mike Stapleton said.
"It's complicated by a tremor disorder and seizures," said Mike Stapleton. "She's walking a tightrope laying in bed with these drugs."
Mike Stapleton said doctors are trying to wean Harper off the ventilator.
"That will be a big step," he said.
Mike and Janet Stapleton became full-time Marco residents in 2004 and they are active members of the San Marco Catholic Church and several civic organizations, including the Rotary International, the Marco Island Fire-Rescue Foundation, the Marine Corps League and the Veterans Memorial Fundraising Committee.
The Stapletons have six grandchildren and Mike Stapleton described Harper as being "fearless and just a little wisp of a thing."
Harper's condition can be followed online by visiting caringbridge.org, registering and then entering the name Harper Marie Stapleton.
More information: To make a donation, send checks payable to the "Stapleton Family Fund" to Mutual of Omaha Bank, Attn: Dianna Dohm, 1770 San Marco Road, Marco Island, FL 34145.