Making a Difference, One Family at a Time
Photography by Chrystal Scanion
Caring for a child with disabilities can send families deep into debt, even with medical insurance. That’s where Paige’s Princess Foundation comes in.
The organization, founded by Heather Alessandro in honor of her 6-year-old daughter Paige, who died in 2010, provides grants to families that need help paying for expenses not covered by insurance.
Alessandro says the organization provided grants to 100 families last year, allowing them to pay for alternative therapies and treatments and to buy adaptive and therapeutic equipment, all of which can make a big impact on a child’s life.
“I’ll never forget where I was, what I was doing and the feeling of relief and excitement when I read the approval email,” says Stacey Lane, the mother of 3-year-old Brinley, who is affected by significant delays in all five areas of development (fine motor, gross motor, social-emotional, self-help and cognitive).
Over the past three years, the Lane family, which includes big sister Maelyn, has been able to provide Brinley with a number of helpful pieces of equipment thanks to grants from Paige’s Princess Foundation. The Lanes have purchased a trampoline, a crash pad for safe jumping, a specialized swing (Brinley’s favorite), putty squeeze toys, magnet tiles and more. These items help Brinley with much-needed sensory regulation and opportunities for movement that soothe her. The Lanes have also used the money to cover some of Brinley’s therapy costs.
The therapy and equipment have supplemented Brinley’s hard work. “Nothing has come easy,” Lane says. “Everything that Brinley can do now is a true testament to her intense work and support from her dad, sister, teachers, all her therapists and me.”
Lane says that Brinley was attending therapy five days a week for a full year at one point. “That put a huge strain on our family and on our wallets, but that was what she needed, so we did it,” she says. “With the help of Paige’s Princess Foundation, we were and continue to be able to help Brinley.”
Although Lane says she and her husband would do everything possible to meet Brinley’s needs, the grants have lessened the family’s stress a great deal.
Costs related to developmental disability care are ongoing. “As these children grow and develop into new life stages, there are new challenges,” Lane says. “These expenses do not end for families.”
A big challenge for Paige’s Princess Foundation is trying to meet the needs of every applicant. “We try to help everyone who applies and qualifies,” Alessandro says. “But it is important to consistently apply our guidelines as a public charity.” When applicants ask for something outside the foundation’s scope, such as medical services or rent, she says the foundation tries to point them in the right direction.
Because the foundation relies exclusively on outside donations, Alessandro says it is difficult to predict when funds will be available at a given time. Providing emergency assistance can be difficult. The foundation currently has more than 26 families on its waiting list.
Alessandro suggests that interested families apply for their greatest need, submit all paperwork including the required insurance denials (she says these are not as difficult to get as many applicants fear), and to give the organization enough time to work through the grant process. “Occasionally, we are not able to help in time-sensitive matters,” she says. “A payment might be due before we are able to raise the funds. We encourage potential applicants to reach out prior to applying to see when we think we would be able to help.”
Paige’s Princess Foundation is able to provide grants mostly through fundraising and donations, although Alessandro says the organization does sometimes receive grants and donations from larger nonprofits.
Although reviewing grant applications and running Paige’s Princess Foundation might seem like a full-time job, Alessandro says no one who works for the organization takes any kind of compensation so that more of the money raised can go to the families being served. “We strive to keep administrative costs down and really debate about spending money that is not directly helping a child. Last year, we were able to provide about 90 cents of each donated dollar towards assistance.”
The foundation’s mission goes beyond the numbers, however. “Heather wants to help us, but also wants to get to know us,” Lane says. “Paige is living on in all of these kiddos that her family is helping.”
Lane says her family is inspired to participate in the organization’s functions as often as possible including an annual carnival, the 5K Paige’s Princess Run and sensory-friendly movie showings. “This family is so welcoming that I wanted to show support and meet them in person right away.”
Thanks to the grants her family has received, Lane says Brinley has received important early interventions that she feels have made a real difference in Brinley’s development.
“Three years ago, I didn’t know what Brinley would ever learn to be able to do, especially since there was a time where she wasn’t making any progress,” her mother says. “But just lately I’ve realized that we are going to be just fine. I now know that nothing will stop her and she is going to accomplish anything that she decides to do.”
For information on Paige’s Princess Foundation, visit their website at ww.paigesprincessrun.com.