Nick and Karen Scott, both employees, have been doing everything they can to raise money to help their 1-year-old daughter Ellie, who has a rare and fatal developmental disorder called alveolar capillary dysplasia (ACD) with misalignment of the pulmonary veins. Nick is a physical education teacher at Lusher Elementary and Karen is an early childhood educator at Hazelwood Central ECE.
Ellie was born last August and first hospitalized in November, when doctors diagnosed her with pulmonary hypertension and put her on oxygen and medications. By May of this year, she was doing better, but still required the oxygen. At that time, Ellie’s doctors decided to do a lung biopsy to find out why she needed the oxygen.
Three days after school ended in May, Ellie had her biopsy at St. Louis Children’s Hospital. Doctors expected her to go home after 48 hours, but she experienced at least 12 hyper-pulmonary crises, causing her lungs to deteriorate. This left her doctors concerned for her survival and seeking a solution.
They decided to put her on an extra -corporeal membranous oxygenation (ECMO) machine, which sends oxygen to vital organs—but it’s not meant to be used for more than a week or two.
This summer, her doctors performed a revolutionary procedure that could change her fate. After adding her to a transplant list and finding a near-perfect match, Ellie’s doctors gave her a double lung transplant to help alleviate the disorder, which affects lung development and blood vessels in the lungs. According to the National Institutes of Health (NIH), there’s no known cause or cure for the disorder, and there are only about 200 documented cases around the world.
She received her new lungs on June 12, and these days, her doctors call her a miracle child. She responded so well to the procedure that she was able to go home by July with only a scar on her torso to remind her of the surgery.
According to the Scotts, most babies born with ACD will have breathing distress within the first few minutes after birth, but Ellie managed to go nine months on her deteriorating lungs, which is believed to be the longest known case. Her medical bills to date are estimated to cost between two and four million dollars.
The Scotts have been invited to become a part of the Alveolar Capillary Dysplasia Association (ACDA), an organization with a mission to gather and share information, provide a supportive environment for families and encourage research related to ACD.
“We are the only family in the world with a child who survived this condition that we know of,” Nick said. “We want to do whatever we can to help other families who may be going through this same thing.”
How You Can Help
Nick and Karen have organized at least two fundraisers to help pay for their daughter’s overwhelming medical expenses and to allow Karen to take time off to take care of Ellie.
One fundraiser is scheduled to take place on Saturday, Oct. 20 at 6 p.m. at the Assumption Greek Orthodox Church in Des Peres.
The evening will include a trivia contest, door prizes, silent auctions, a bake sale and pizza, snacks and soda. Attendees can also purchase “Ellie” t-shirts. The cost is $25 per person at the door, or you can purchase tickets in advance for $20 per person or $160 for a table of eight. If you’d like to reserve a table, you can pay $80 by Sept. 15 to reserve it, and then pay the balance on Oct. 20.
Besides the trivia contest event, Nick’s cousin, Rick Kavadas, will host a charity golf tournament for Ellie on Friday, October 12 at the Missouri Bluffs Golf Course in St. Charles.
“Our goal is for Karen to be able to take the year off,” Nick Scott said. “Ellie’s care is so intense, it’s unbelievable. Twice a day, we draw her blood and we have to give her medicine intravenously.
"At 8:00 a.m. every day, she takes eight different medications. Every two hours she has to have an additional medication. Our tablet computer has become a medicine reminder,” he added.
More Ways You Can Help
If you can’t attend the trivia night or the golf tournament but you’d like to help, you can make donations or give to a silent auction. All proceeds will go to care for Ellie Scott. For more information or to donate, contact Christy Scott at (636) 244-9495 or (314) 452-2287 or by e-mail at firstname.lastname@example.org
“She’s doing really well; her doctors are surprised at how well she’s doing,” Nick Scott said. “She’s only going to clinics once a week now. She got cut back early because she is doing so well.”
Keep up with the Scott family and learn more about Ellie at http://elliesangels.webs.com.