A month ago nearly to the day, Nichole and Jeremy Carver got news no parent could imagine – they were told their infant son Hudson would not live past the age of two.
“Everything got dark and all I could see was a pinpoint of light,” Nichole told the Progress from Egleston Hospital, where Hudson was scheduled to have surgery on Monday, July 30. “My husband wasn’t home when I got the call from Emory. They said they didn’t want to say over the phone, but I wanted to know. I hyperventilated.”
That was the first week in July when Hudson, now nine months old, was diagnosed with an extremely rare condition - Gaucher (go-SHAY) Disease Type 2. As in Hudson’s case, symptoms become apparent within three to six months of life and can cause death before the age of two. Symptoms include enlarged liver and spleen, seizures, jerking, poor ability to swallow, and poor development.
“His body doesn’t create an enzyme that basically gets rid of trash in our bodies,” Nichole said. “We realized something was wrong around four months - and I’m a nurse and I’ve got other kids so I wasn’t a new mom. I knew there were problems. He was having choking episodes and noisy breathing. A trip to the ENT turned into 16 days at Scottish Rite ICU.”
The same day the Carvers received their son’s diagnosis, Nichole was online researching a disease she’d never heard of and reached out for help.
“In 2014, I had a daughter who was stillborn and I found a lot of support on Facebook, so after Hudson’s diagnosis I went to Facebook and found a Gaucher support group. The diagnosis was at 4:45 and within an hour I had three moms on that group contact me.”
The mothers, who had children with the same disease, immediately connected Nichole with Dr. Ozlem Goker-Alpam, the world’s leading Gaucher’s specialist.
“My call was returned within 15 minutes,” Nichole said. “I was just hours from the diagnosis and still processing and was now in touch with this doctor, who called me at 1 a.m. from where she was. It was amazing.”
Nichole found out about Enzyme Replacement Therapy, which would give her son what his body needs to “get the trash out.” The problem is each treatment is $1,500 each session and must be administered every single week for the rest of his life - and it still doesn’t solve all his issues.
“Gaucher patients’ medical expenses cost around $300,000 a year, and I don’t know if insurance will pay for it, but I don’t care. I’ll do whatever I need to for my son,” Nichole said. “These treatments will help with the enzymes, which is great, and help with his liver and spleen, but it won’t help with the neurological issues because it doesn’t cross the blood-brain barrier.”
ERT treatments began in Virginia, where Hudson will continue to be monitored by a specialist, but the family will be able to administer them at Emory and eventually at home – but they are still costly and don’t guarantee survival. A GoFundMe campaign named “Hugs for Hudson” has been launched to help the family. At presstime $13,000 had been raised.
“We are asking for your prayers and donations to help take some of the financial burden off of these parents,” the GoFundMe account reads, “so they can focus all of their attention on Hudson and their two other children, Gavin and Olivia.”
There is also a Hugs for Hudson Facebook page that has over 1,500 followers and numerous benefits are being organized by family and friends, including one this Saturday (see ad on page 6A for details).
“Through this experience, any doubt I had in humanity is gone because of the way people have reached out and supported us,” Nichole said. “I can’t explain the gratitude we have for this community, and for my incredible family and the family I married into. Our family has a very strong faith, and I’ll tell you I’ve never prayed like I’ve prayed – I get down on my knees. I don’t know what the outcome will be, and I break down, but in my heart I know whatever it is it will be okay.”
Nichole said despite the grim diagnosis, there’s no way she’s losing hope. She believes Hudson will overcome, and said God constantly gives her signs - including a painted rock she found the day Hudson was supposed to have surgery to get a chest port and feeding tube. The surgery didn’t happen because of a high fever. The message on the rock read, “Your speed doesn’t matter. Have hope. Always love!”
“I’ve got my support group of moms who have kids who are surviving the odds,” Nichole said, “and Hudson is still meeting milestones and is the happiest kid you’d ever know. His smile is infectious. So many people are watching this little boy, and I think it’s God’s will he will be a miracle.”