Chloe Lundy, 2, plays on a swing in the yard of the home of her grandmother, Debbie Hendricks, in Dousman on Friday, Aug. 27. Chloe has Pompe disease, a rare genetic affliction, and has lived far longer than the original six months doctors predicted. (Catholic Herald photo by Ernie Mastroianni)Like many toddlers, Chloe enjoys snacking in front of the television.
What sets the 2-year-old apart is that she was never supposed to be able to watch TV or eat solid food. In fact, she wasn’t supposed to run, play or talk as doctors had given her only six months to live.
Not only is she doing all the above, but her doctors are calling her a miracle. More surprising, Chloe’s remarkable story captured the attention of Jerry Lewis, actor, comedian and Muscular Dystrophy Association’s National Chairman. Observant viewers may have seen the family on the annual Jerry Lewis Labor Day Telethon.
Chloe suffers from a rare enzyme shortage called Pompe disease, which affects one in 40,000 births; the infant onset type causes muscle wastage, nerve damage and heart problems.
Parents dazed by diagnosis
Derek and Annie Lundy were dazed, and struggled to comprehend what they were being told by doctors. It was late spring in 2008, and just days before, they had been celebrating the birth of their third child. On this day, however, the couple learned that Chloe has the rarest form of the fatal disease, Infantile Onset Pompe, Crim Negative, which means that she has none of the enzymes that her muscles need to function.
Chloe’s heart showed signs of distress during labor and Annie was concerned about undergoing a Cesarean Section. But Derek and her mother, Debbie Hendrick, realized something more was seriously wrong.
“It was explained to us that a nurse would rush the baby to the nursery as soon as she was born,” explained Debbie. “She was immediately hooked up to so many machines that you almost could not see the baby. We found out that Chloe’s heart was enlarged and she had some breathing issues.”
Observant nurse ‘saved her life’
Doctors at Oconomowoc Memorial Hospital kept mom and baby in the hospital for a few extra days. The day before Chloe was to be discharged, an observant nurse noticed something.
“I wish I knew her name because I pray for her every day,” said Debbie, adding, “She noticed that Chloe’s heart rate dropped for just a couple seconds. Because she noted this and took it seriously, they decided instead of sending the baby home that they would transport her to Children’s Hospital. This probably saved her life. Most other infants are sent home, and then when problems start to arise, it is too late to save them. Chloe lived in the Neonatal Intensive Care Unit at Children’s Hospital for the next month. Most doctors have never heard about Pompe.”
Total strangers pray for Chloe
As Annie and Derek struggled to explain the disease to their older children Braden, 8, and Paige, 7, they also grappled with the grave diagnosis and the newfound status in learning that Chloe was the youngest person worldwide to be diagnosed with Pompe. Terrified, Debbie turned to prayer, begging God to save her granddaughter.
“I was so scared,” she admitted. “Not only for this dear sweet baby that we waited for, for so long and wanted so very much, but also for my daughter, Annie, who might lose her baby. I was desperate to do something to help. I phoned friends, family, e-mailed everyone I knew and begged them all to pray for Baby Chloe. I even asked total strangers in the grocery store for prayers. It is amazing how many people, children, parishes and churches of other faiths have and still are praying for Baby Chloe.”
Annie Lundy holds her miracle baby, Chloe, 2, and poses with her family in Dousman in August. With her are her parents, Debbie and Kurt Hendrick, her stepdaughter, Paige, 7, and son Braden Hendrick, 8. (Catholic Herald photo by Ernie Mastroianni)Treatment includes Genzyme, chemo
To treat the disease, doctors at Children’s Hospital are giving her an enzyme replacement treatment by Genzyme, a similar treatment that was featured in the recent movie “Extraordinary Measures.” The movie tells the true story of John Crowley, a man who defied great odds in pursuit of a cure for his two children who suffer from Pompe.
In Chloe’s case, however, her body does not recognize the enzyme and her own immunities attack the treatment, so she also receives three different types of chemotherapy.
“The chemo is being used to suppress her immunities so her body will accept the treatment; however, with the chemo, her body cannot fight off colds or other infections,” explained Annie, 26, of Sullivan. “This puts her at high risk for other diseases. We had real worries when the Swine Flu (H1N1 flu) made its way to our area. I help my mom run a day care in her home and several of our children had it, and even Paige had it. Every time we were exposed to the Swine Flu, all of us, even my mom and dad, had to get a prescription so that we had less of a chance of carrying the disease to Chloe.”
Family encouraged to share story
Despite frequent setbacks such as colds, weakness, emergency visits to the hospital and a recent surgery to improve the muscles around her eyes, Chloe’s progress is almost miraculous, leaving doctors wondering if it is the medication or the prayer that has kept the little girl alive and active.
The company that makes Chloe’s medications also markets treatments for Muscular Dystrophy. The two diseases are closely related in that both affect the muscles. After showing significant progress, Genzyme contacted Chloe’s genetic counselor who encouraged Annie, Derek and Debbie to share their story.
“Her story got to MDA because the doctors are shaking their heads and telling us that it is a miracle that Chloe is alive, much less running, jumping and playing with other children,” said Debbie. “They have also said that she is an inspiration and a pioneer in this field. We, of course, know that it is a miracle from our loving Father.”
Long term, Chloe’s future is uncertain and the doctors at Children’s Hospital continually prepare the family for the worst. However, out of the seven children throughout the world with the same diagnosis, she is making the most progress. Down the road, Chloe might need additional medical devices, including a wheelchair, but for now, she is happy, cheerful and loving.
Daughter brought mom back to church
“We don’t know what to expect; the doctors say she is in ‘uncharted territory,’” said Annie. “Because Chloe can take a turn for the worse at any time, I take it one day at a time. I don’t look forward and I don’t look back, because today will always be a better day than the last.”
Rather than become bitter or angry with God for her daughter’s disease, Annie, who had drifted away from the Catholic Church, found that her tiny daughter was a gift that God used to bring her back to the church.
“Before Chloe, I was lost,” she confessed. “I wasn’t close to God. I was looking for the right church and the right religion. I bounced from church to church and then gave up. Chloe has brought so much joy into my life. She has taught me so many things and showed me what faith is, and reintroduced me to God. During the hardest time, the beginning of Chloe’s life, I knew something had to be done.”
After much prayer, Annie remained uncertain as to where God was leading her, so she went back to St. Bruno in Dousman, her childhood parish. Welcomed, Annie knew at once that she was home.
“So many people were already praying for Chloe and me, because my mom (also a member of St. Bruno) had asked them to,” she said. “People offered to help me with what I was going through – but I know for certain, that without Chloe, I would still to this day be searching for God.”
Parish family is key support
Despite her unwavering faith, Debbie has had moments of weakness and there are days when she has a difficult time remaining stalwart for the young family.
“My faith doesn’t slip, but the ‘being strong’ part does once in a while,” she explained. “Our St. Bruno parish family has been such a great support to us. They pray for Chloe every day at daily Mass, and the children pray for her at their Mass, too, and in their homes. When I taught religious ed, I used to tell the children that Jesus especially hears the prayers of children. This is most certainly true. Prayer is powerful. Our Father has given us so many gifts; he has gifted us with our beautiful little Chloe, and he has given us time … already far more than the original six months. I have so much to be thankful for. We have been so blessed – we were also blessed to have Chloe anointed at St. Bruno by Fr. Ralph (Gross) during the Mass.”
