Baby Alana Receives Community Support – Friday, July 17, 2015
On September 14, 2014, Alana was born a healthy, smiling baby, to two loving parents.
Alana lived a normal life for her first 8 months on earth until shortly after, her parents Alexa Shoultes and Kyle Prettyman noticed something was wrong.
“We started seeing her get fussy, she wouldn’t take a bottle, we would try to feed her and her head would be down, she started leaning and became unresponsive,” Alexa said.
It was at that point the parents of this barely 8 month old baby decided they needed to take her to the doctor. Alana’s parents brought her to her physician, who quickly told them that their child was probably just going through ‘a thing’ and to come back if it gets worse. Not being satisfied with that response, the parents took Alana to Beebe Medical Center in Lewes, where doctors quickly recognized that Alana should get a chest X-ray and CAT scan.
After the first diagnosis, Alana was put on medicine for ten days. When doctors didn’t see any improvements, they realized it had to be something else. When the CAT scan results came back, it showed there were dense spots on Alana’s brain. While in the hospital, Alana was severely dehydrated and was not eating so it took some time with an IV. The doctors had originally wanted to wait for the baby to get stronger before getting an MRI, but with negative test results for the first diagnosis, they decided to rushed the MRI.
Upon receiving MRI results, doctors recognized Alana’s disease as Leukodystrophy, one of a group of disorders characterized by degeneration of the white matter in the brain. Leukodystrophy is characterized by specific symptoms including decreased motor function, muscle rigidity, and eventually degeneration of sight and hearing. The doctors at AI Dupont drew blood from both parents for genetic testing since there are multiple types of this disease.
“We waited for the tests to come back but for awhile we had no idea what it was,” Alexa said.
The disease is untreatable and there is a timeline for many kinds of Leukodystrophy of 2 years. Although this is the timeline for normal cases with this disease, Doctors say Alana’s exact disease has never been reported before.
“My genes mixed with Kyle’s gene’s created a gene mutation that has never been reported before,” Alexa said.
Alana ultimately ended up spending 46 days at AI Dupont.
Life After Diagnoses
Alana has been on multiple medicines since the diagnosis that are simply for symptom management. There is no cure for the disease and there has been no improvement, however, these medicines keep Alana’s quality of life as best as it can be.
Alexa says her and Kyle’s life have changed tremendously since this diagnosis, but she says her family is fortunate for all the help they have.
“Life has changed in every way, we have nurses 16 hours a day, she cant eat by mouth, Alana has to use a Gastrostomy Tube for feeding...” Alexa said. “There is scheduling with so much to do, Alana used to be so independent but now she is always irritable..”
With Hospice, insurance meetings and doctors appointments, both Alexa and Kyle have had to leave their jobs at this time.
“We spend every second we can holding her and loving her,” Alexa said. “We have about 2-3 scares a day where she stops breathing and turns grey, she had her first seizure the other day for 7 minutes..”
How To Help
The family received their first check for $500 just the other day.
“If I could make families feel the way I did when I opened that first check, I don’t even have words to explain it,” Alexa added.
Facebook Page: Hugs For Alana
Funds directly to Wells Fargo in Millville: checks can be mailed to “The donation account of Alana Prettyman,” c/o Wells Fargo Millville; 202 Atlantic Ave.; Millville DE 19967.
Saturday July 11: Benefit at Scotty’s Bayside Tavern on Rt. 54 West Fenwick from 2-6 PM with a $10 Buffet, 50/50’s and a Chinese Auction.
Please contact Robyn: (443) 614-3904 or Tammy: (302) 563-2075 with questions
Saturday, July 18: Bracelets at Hocker’s Supercenter, ‘Hugs For Alana’ Bracelets
Sunday July 26: Benefit at Cripple Creek Golf and Country Club in Dagsboro, Del. from 4-9 PM with a Silent Auction, Prices, DJ, Food, and Cash Bar
Call (302) 988-1586
The family is planning to set up a foundation with benefits raising money to help families just like them that are out of work and need help paying medical bills. For more information on the foundation, keep checking the Hugs For Alana Facebook page.