The latest to join the ranks: Leadership Erie County, a local nonprofit organization.
Together, the two groups plan to rally support for Ali McKean, 7, a Margaretta Schools student diagnosed almost two years ago with a rare, disabling condition.
Leadership Erie County recently opened a Citizens Bank account in her name and is actively seeking donations. Its members hope to collect enough funds to build a downstairs bedroom and bathroom in Ali’s home, as she is gradually losing the ability to walk up stairs.
“It’s a big concern that needs to be taken care of” said Margaretta Schools food service director Sarah Ransom, who started the project.
Ransom’s Leadership Erie County colleagues are Ron Snyder, a Sandusky police sergeant, Shannon Chambers, leader of Citizens Bank’s East Perkins Avenue branch, and Lenny Wacenske, local Salvation Army major.
None have ever met Ali, but said her story inspired them to make a difference.
“A little funding will go a long way and have a huge impact on that family,” Wacenske said. “We want to help and serve them. If our organization sees a need, we try to focus the community’s efforts toward helping”
Ali’s condition is called fiprodysplasia ossificans progressiva, which is commonly abbreviated “FOP.” It causes muscles and connective tissues to turn to bone, spontaneously and when damaged. Bridges of extra bone gradually develop across joints, severely restricting Ali’s movement.
FOP is sometimes referred to as “Human Mannequin Disease” or “Stone Man Syndrome” because it eventually renders its victims completely motionless, imprisoned in a second skeleton.
Most recently, the disease has also begun to limit Ali’s lung capacity.
There is no known cure or treatment, but handicap-accessible home renovations will ensure Ali can live as comfortably as possible, said her mother, Angela McKean.
“The best thing we can do to prolong her life and the quality of it is modifying our home to make her days easier and safer,” Angela said. “We’re so grateful for everyone’s help that the word itself does not do justice to how thankful we are ... This means the world to us”
The McKean family also thanked many groups and businesses that have already assisted Ali with projects and donations, including Janotta & Herner Inc., Shortridge Construction, Lucky Dog Speedway Charities, St. Mary’s Catholic Church and Sandusky Central Catholic School students.
Want to donate?
Visit any Citizens Bank or Champaign Bank branch and ask to donate to Ali McKean’s fundraiser account.
Money collected will support the family’s efforts to remodel their home to be handicapaccessible, unless donors designate it for other services for the family.
For more information, or to donate any other services to the McKean family, call Sarah Ransom at 419-684-5322 or email firstname.lastname@example.org .