Meet Jaelyn & Reagan
Jaelyn and Reagan are sisters from Iowa living joyfully with undiagnosed conditions. Jaelyn is a patriotic, silly, and strong eleven-year-old who enjoys music, school, and the color purple. Reagan is a determined, silly, and shy three-year-old who likes playing outside, books, and baby dolls.
Andrea and Aaron welcomed Jaelyn Liberty into the world in February of 2010 after a typical pregnancy and delivery. Jaelyn was doing well at birth and was discharged without any issues. After coming home from the hospital, Jaelyn began to struggle with eating and vomiting. She was often unsettled and uncomfortable. Andrea and Aaron began to worry that something wasn’t quite right. After unsuccessful standard interventions like reflux medication, Jaelyn was admitted to the hospital at six months old with failure to thrive. Doctors thought she just needed to eat and gain weight to get stronger. They tried fortifying formula, occupational, physical and feeding therapy. Andrea and Aaron had a feeling that there was more going on with their baby than just an eating issue.
By ten months old, Jaelyn was very weak and barely eating. She wasn’t meeting milestones like sitting up and rolling over. Andrea and Aaron’s concern grew as they were not getting answers from specialists. Jaelyn was admitted to the hospital for extensive testing including genetic testing, a swallow study and radiology studies. Jaelyn was given a working diagnosis of Spinal Muscular Atrophy (SMA). Although the diagnosis was hard to hear, the couple was thankful to have direction on how to care for Jaelyn. However, the results of genetic testing came back negative for SMA leaving the parents with more unanswered questions.
Over the next five years, Jaelyn went through various genetic testing to try to find a diagnosis, but results continued to come back inconclusive. One symptom would point to a diagnosis but then it was ruled out. Then another symptom would point to another condition, but it was ruled out as well. Jaelyn underwent Whole Exome Sequencing genetic testing and it came back inconclusive. Doctors say Jaelyn has an unknown progressive neuromuscular disorder with a possible genetic component.
The family sought a second opinion at the Mayo Clinic. Doctors agreed that they had done all the right testing, but they had never seen this condition before. The plan was to treat the symptoms as they presented.
Jaelyn’s unknown disease has progressed throughout the years. Jaelyn has been through many surgeries, tests and procedures. Most of her surgeries have been orthopedic for contractures and scoliosis. She spends a lot of time at appointments with her many specialists. Through it all, Jaelyn lives with joy.
Jaelyn uses a J-tube for nutrition, a purple power chair for mobility, a stander at school, a cough assist and vest system and bi-pap ventilator at night to help with restrictive lung disease.
Jaelyn enjoys being outside, watching TV, playing with her sisters, and listening to music. “She loves to be at school and has some of the best friends an eleven-year-old could ask for. Her teachers and caregivers there are absolutely incredible!” Andrea shares.
Reagan Joy was born in December of 2017 after a typical pregnancy and delivery. Shortly after birth, Reagan began to struggle to eat and seemed to be in pain. After a few weeks of vomiting and being agitated, Andrea and Aaron knew that Reagan was headed down the same path as Jaelyn. Andrea noticed that Reagan seemed “floppy” and that her trunk and core seemed weak.
Reagan began feeding therapy around three or four months old. Andrea, knowing the importance of nutrition for development, advocated for Reagan to have an NG-tube placed at six months old. Reagan slowly began to gain weight but continued to struggle with vomiting and reflux and medication was not working. Andrea knew Reagan needed to be fed past her stomach and advocated to have a GJ-tube placed. They found a doctor at the Mayo Clinic that would place a GJ-tube in such a small baby and it was placed on Reagan’s first birthday. “I’m thankful that because of our experience with Jaelyn, we knew how to advocate better for Reagan,” Andrea explains.
Reagan has some specific diagnoses like scoliosis, bilateral hip dysplasia and hip dislocation, but her overall condition is unknown.
Reagan is a playing, growing, and silly three-year-old. She looks up to her big sisters and loves giggling with them. She enjoys being outside and exploring the world with her purple power chair. “It’s been fun to see her personality develop with the ability of mobility and independence,” Andrea shares of her youngest daughter.
In November of 2019, the family was accepted into the National Institute of Health’s Undiagnosed Disease Network. The family was honored and hopeful about the opportunity, but the trip was canceled due to Covid-19. They had a virtual consultation to discuss the results of Whole Genome Sequencing, which was inconclusive, but did uncover a common variation that the sisters share.
In the midst of waiting for answers for their girls, the family chooses to stay present in today to appreciate simple joys and small victories.
Time to get loud shouters!
Throughout the month of June we will be shouting loud for Jaelyn & Reagan!
So click here to shop now where every purchase in June will help make Jaelyn and Reagan’s home more accessible, including helping with a remodel of their bathroom. To help support kiddos like Jaelyn & Reagan every month, click here to start a monthly subscription.