Sarah Stone is a bright and articulate 12-year-old who loves to sing and is looking forward to seventh grade at McKinley Middle School. Because she has sickle cell anemia, she’s also hoping to miss fewer days of school this year.
“I hope seventh grade is easy, like sixth grade,” she said. “Even though I sometimes miss a lot of school, I’ve never been tardy. I had the record in sixth grade, and I want to do that again.”
Stone was recommended by her nurses to become a Wish Kid with the Make A Wish Foundation, and her dream is to attend the 2018 Grammy Awards. Employees from Meetings & Incentives Worldwide in Caledonia are actively fund raising to send Stone and her mom, Genise Perry, to the show. The goal is to raise $6,000 to pay for airfare and transportation, hotel and meals, a great dress for Stone, and additional activities and trip-related costs. So far, there is $5,300 in the pot.
“I just really love music, and I want to be a singer when I grow up,” Stone said when asked why she chose the Grammy Awards for her wish. “And, even if I don’t make it as a singer, I can always say I was at the Grammy’s.”
There are two M&I W fundraisers this week for Stone:
- 5 to 8 p.m. Thursday (today!) at The Depot, 11901 Highway G, in Caledonia – $20.00 wristbands include the dinner buffet, one drink ticket for domestic beer, rail or soft drink and one raffle ticket for The Depot raffle basket. There is a 50/50 raffle for $5 per ticket. Prize raffle tickets are $2 each or 3 for $5. The grand prize for the raffle drawing is a two-night stay at the Grand Geneva Resort & Spa in Lake Geneva and a round of golf for two on the Brute Course.
- 5 to 9 p.m. Saturday at O’Brien’s Irish American Pub, 4928 W Vliet St, Milwaukee – free food, drink specials, and live performances. There is a 50/50 raffle for $5 per ticket. Prize raffle tickets are $2 each, 3 for $5, 6 for $10 and 11 for $20. Prizes and silent auction items include raffle baskets; restaurant gift cards; membership gift cards; an autographed basketball by Bo Ryan; a weekend, two-night stay at the Chicago Marriott Suites Deerfield and breakfast for two; and much more.
Ashley Vance is leading the charge for the Saturday fundraiser, and she said that M&I W supports the Make A Wish Foundation as part of the company’s overall corporate responsibility strategy. When company owners Jean Johnson and Tina Madden discovered that a local student was selected as a Wish Kid, their annual team-building/fundraising competition focused on Stone’s Grammy wish.
Perry is grateful and excited to share this adventure with her daughter.
“What everyone over at Meetings & Incentives is doing is just incredible,” she said. “I’m very excited that the fundraiser and this whole process is taking place to get Sarah to the Grammy’s.”
Vance confirmed that Perry and Stone will be invited to a special presentation in September during M&I W’s annual team-building Campus Week at Grand Geneva. The timing of the presentation is nice because September is Sickle Cell Awareness month.
Stone was diagnosed with sickle cell before she was even born. Perry underwent an amniocentesis primarily to diagnose any potential developmental disabilities, but doctors found the sickle cell instead.
“They told me she was developing fine and wouldn’t have any delays,” Perry remembers. “But then they told me Sarah has sickle cell, and everything just stopped.”
Sickle cell anemia, in short, means that Stone’s red blood cells are not round and smooth so they travel easily around her body. Instead, Stone’s red blood cells are shaped like crescent moons – sickles – and they can get caught, depriving parts of the body of oxygen, blocking small blood vessels and causing a lot of pain as well. Some complications include vision problems, swollen hand and feet, delayed growth and increased vulnerability to infections.
Parents who carry the trait – as both of Stone’s parents do – can have children who are totally healthy; also carry the trait but never develop sickle cell or who are born with sickle cell.
Stone has an older sister who is perfectly healthy and a little brother who carries the trait but does not have sickle cell.
“I got one of each,” Perry said.
The hardest part of having a child with sickle cell, she said, is the roller coaster of health issues. Stone has missed up to 40 days of school in a single school year because of sickle cell complications, the most recent being this past spring. Perry said it’s going on six or seven weeks of good days, and she’s hoping a new medication is what is making the difference.
To help Stone keep up with her schoolwork, she is on a 504 plan, which allows her extra time to complete assignments and stay up-to-date with her classmates.
Still, despite her precarious health, Perry said her daughter is vivacious, outgoing and musical.
“Her older sister is in theater and choir, so I think there’s some modeling going on there,” she added. “Sarah takes singing lessons and had four parts in ‘The Wizard of Oz’ this summer. She’s very into entertainment and reading about who’s who in show business.”
It does get hard, though, Perry admitted.
“I’m okay with this for the most part, but I get angry when Sarah gets sick and we’re rushing to the ER when other parents would just take … whatever … as a normal part of childhood,” she explained. “I feel so helpless because there’s nothing I can do. I feel like I gave this to her.”
The good news is that medical breakthroughs continue, and the chances increase every day that Stone will live a long life. Had Stone been born 40 years ago, she would be considered lucky to make it to 14, but now she can look forward to living well into her 60s and possibly longer.
“Sarah is beautiful and feisty inside and out!” Perry said. “She’s flourishing, and it’s really great to see.”