Pennsylvania Warriors: Amelia, age 7 and Penelope, age 3
sweet, silly, strong
Congratulations, Amelia … AND Penelope!
Ryan and Kim Dunbar of Pittsburgh nominated their daughter, Amelia, age 7, for the Legacy Project early in 2018. Amelia’s list of activities goes on and on! She’s busy with gymnastics, swimming, cheerleading, 4wheeling and traveling. In spite of her activities, she has NEVER missed a vest treatment for her cystic fibrosis, but her current vest requires her to be stationary, attached to a machine! They nominated her so that, with the mobility of the AffloVest, her treatments would no longer keep her exclusively on the bench.
The mobility of the AffloVest is not all that is appealing about the prospect of receiving the gift. “She has been denied a replacement vest because hers is still functioning even though it’s showing its age and has a lot of wear and tear - it’s been patched together a few times,” recalls dad, Ryan. Both Ryan and Kim work (Ryan as a project manager and Kim as a special education teacher) AND are the parents to two very active, happy girls - both of whom have cystic fibrosis. They hadn’t nominated their younger daughter, Penelope, because at the time of the nomination she was too small for an AffloVest.
Having siblings or other family members in the same home with CF presents unique challenges. Ideally, people living with cystic fibrosis should stay six feet apart to avoid cross infection. According to Daniel Weiner, M.D. of UPMC Children’s Hospital of Pittsburgh, “we have to balance the guidelines with some practicality - it is impossible (and undesirable)to keep siblings apart in the home setting. We try to decrease the chances for cross-infection by having siblings do their airway clearance treatments (when they are more likely to be coughing) while they are not sitting together in the same place.”
Amelia’s sister, Penelope, is just 3.5 and her care for CF has been more complicated than Amelia’s. Her first 3 months of life were spent in the hospital related to her bowel and she’s had recurring issues with her liver. However, she doesn’t let it stop her. Penelope “is a spitfire with an ‘I don’t care I run this place’ attitude.” She adores her sister and loves to craft and dress up doing “the whole princess thing.”
About a year following Amelia’s nomination, the Dunbars were notified that Amelia would be the Pennsylvania Legacy Project recipient and receive an AffloVest! Thanks to the generous people with the Cystic Fibrosis Fund of Berks County, Amelia and Penelope got to be princesses for one night. The whole family were guests at their 18th Annual Valentine’s Gala.
Amelia and Penelope’s Legacy Day - The valentine’s gala
The Legacy Foundation, AffloVest and the Joyce Family Foundation teamed up to make a special day for this special family. Ryan and Kim knew that Amelia had been selected as the Legacy Project recipient for Pennsylvania, and so they prepared for the reveal at the CF Gala in Reading, PA. To eliminate nerves about meeting new faces, Colton met the family in the afternoon with some fun presents for the girls and lots of silliness. That night, the girls enjoyed fancy dining in their pretty dresses. When it was time to make the presentation in front of the crowd of nearly 800, Colton surprised everyone that BOTH girls would receive an AffloVest! Penelope, a little older and bigger from the time of the nomination, was just the right size!
After cheers and just a few happy tears, the family got a quick AffloVest fitting and tutorial and they got to spend the rest of the evening trading in their fancy food for chicken nuggets, music and dancing, and silly pictures.
We were so proud to be part of an important event in Pennsylvania. The event raised more than $110,000 for CF causes, most supporting local and regional families. And, to show their support for the mission, the Cystic Fibrosis Fund of Berks County of Berks County Community Foundation contributed more than $10,000 to the Legacy Foundation! Congratulations to this persistent group of CF friends and family who announced that Reading would soon have an adult CF clinic through Tower Health. So many families will now have care close to home!