Teresa Smith remembers sitting in the office at HudsonAlpha Institute for Biotechnology when the doctor came in and gave her the diagnosis: Her daughter, Lakely, had Pitt Hopkins Syndrome. Those three little words came after 13 years of struggling, frustration and tests. Even as an infant, Teresa had to use a syringe to feed Lakely because she was so tiny and couldn’t latch on to the bottle.
She had taken Lakely all over the South looking for answers. Doctors and specialists predicted a myriad of rare conditions, but they could never make Lakely’s symptoms fit into any one category. Turns out there was a reason for that.
At the time Lakely was diagnosed, there were only 48 children in the world who had Pitt Hopkins Syndrome, a genetic disorder that causes children to be non-verbal and have breathing and gastrointestinal trouble.
As she heard the numbers and statistics, Teresa sat there thinking, “Who is going to help 48 children?”
There are more than a million people with diabetes, just in the United States, and more than a billion cases of cancer diagnosed in America each year. Money pours into those causes for good reason, but Teresa didn’t know who would try to help a condition that affects less than 50 people in the world. She felt defeated, not sure how to help her daughter.
After the diagnosis, Teresa got online to see just what was being done for Pitt Hopkins. That’s when she found an online community of people just like her—people taking care of these wonderfully happy children who happen to have some developmental delays. Soon there were 250 cases of Pitt Hopkins diagnosed. Today, there are more than 500. It’s not that the condition is growing more prevalent. It’s that doctors are finally knowing what to look for and how to diagnose it.
Teresa knew she had to help other parents get answers for their children, and that meant raising more money for the researchers studying the syndrome. She sent an email to her AEgis Technologies coworkers telling them of Lakely’s diagnosis and the Pitt Hopkins Foundation she had found online. Most of them knew and loved Lakely; her sunny inclination makes it hard not to fall in love.
“That’s the thing, (her) disposition is pure happiness,” Teresa said. “She wakes up smiling, goes to bed smiling.”
A few days later, a group of her coworkers came into Teresa’s office with an idea to raise even more money for Pitt Hopkins research.
Love For Lakely
AEgis employees have always been ready to jump in and help wherever it’s needed, so as soon as they got the email about Lakely, they started brainstorming about how they could raise money for Pitt Hopkins research. Joanna Douglas, AEgis Corporate Comptroller, said Teresa’s dedication to her children prompted them to want to help even more. Joanna also knows Lakely and described her as having an awesome spirit.
“Teresa, she’s just been through so much with Lakely and as a parent trying to find out what she can do for her child to make her child’s life better,” Joanna said. “When she found out the diagnosis and found out there was a 501c3 organization that funded research to help find a cure and help find treatments, that just really inspired us to do something.”
At first they were thinking about a volleyball tournament or a bake sale, but then one of the AEgis employees went home to her husband and told him what they were planning. He came up with the idea for a golf tournament—something that would raise more money than a bake sale and wouldn’t require copious amounts of time spent in front of an oven.
The first two years of the Love for Lakely Golf Tournament were a hit. In 2015 they raised almost $20,000. Then, in 2016, they had 80 players and raised over $21,000. This year they’re hoping 100 golfers will come out to the event on September 22.
Registration is $150 per player and includes breakfast, lunch, door prizes and the chance to win a two-year lease on a new car if you’re skilled enough to make a hole in one.
All proceeds will go to the Pitt Hopkins Foundation. It’s important to note that the research being done by the Pitt Hopkins Foundation will also go to help numerous other diseases and conditions like Alzheimer’s, Parkinson’s, autism and epilepsy.
The golf tournament is one way to give back to Lakely who has done so much for those who know her.
“Most children are grumpy in the morning,” Teresa said. “Even my sons have said she’s the only one I know that wakes up smiling. I think it makes all of our days.”
While she isn’t sure when or where it will happen, Teresa is confident researchers will find a cure for Pitt Hopkins one day. Until then, she will enjoy spending time with her sweet daughter and equally loving sons.
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