Conference Helps Family Cope with ARPKD
Eighteen-month-old Alexis Alati isn’t your average child. Besides battling ARPKD, she has also struggled with complications from a premature birth and collapsed lung.
When Alexis was still in her mother’s womb, a sonogram showed that she might be having some problems. But it wasn’t until she was several months old and had to see a developmental specialist that Alexis was diagnosed with ARPKD. At that point, her blood pressure was so high she had to stay in the hospital for 10 days.
Today, Alexis has to take four different medications each day. She is starting to develop cysts on her liver and has an enlarged spleen. But on the outside Alexis looks like any other little girl. According to her parents, Melony and Bob, Alexis is a very happy child and never acts as if she is in pain.
“She is amazing,” said Melony. Alexis has two brothers, one of whom is her twin, and neither are affected by ARPKD. “She is just as active as the other kids her age and has excellent verbal skills.”
Still, Melony and Bob were anxious to attend “Hope on the Hill: The 17th Annual Conference on PKD” June 23-25 in Washington, D.C., where they hoped to learn more about ARPKD and meet other families affected by the disease.
“We just want to know what the future holds for our daughter,” Melony said. “I love Alexis and just want to help her feel the best she can.”
The PKD Foundation’s annual conference, held each year in June, offers a unique opportunity for families to connect with PKD patients, nephrologists and researchers from across the country and is an especially great opportunity for families like Alexis’, who have never heard of PKD.
Melony and Bob arrived at the conference June 23 in time for "The Basics of ARPKD" session and an ARPKD pizza party and welcome reception that evening. On Saturday, they attended a meeting on "ARPKD and Congenital Hepatic Fibrosis," followed by a luncheon program where they watched a new video on PKD and later learned about ARPKD research, dialysis for children and transplantation for children. Sunday's sessions included topics, such as "Being a Better Healthcare Consumer/Insurance Issues" and a "Q & A on ARPKD."
Like the many other parents attending the ARPKD sessions, Melony and Bob asked a lot of questions about their daughter's health and future and returned home to Troy, MI, on Sunday with just as many answers.
"We really felt we were leaving way more knowledgeable," Melony said. "I can't say that any one part was better because it was all excellent to learn, to really understand how the body works, what is going on with the disease. If anything, (the conference) made us feel it's not so gloom and doom."
"We thought it was excellent," Melony added. "We'll definitely go back next year. We plan on coming every year."
Next year's Annual Conference on PKD will be held in Orlando, FL. Additional details will be available in the coming weeks. For more information about the conferences, please click here.
To learn more about ARPKD, click here.