MORE the Merrier
I have the best big sister in the world, I wouldn’t trade her for anything. But I would have loved a little brother or sister to get to nurture and protect like Linsay did for me. This past year my wish came true and I gained two little sisters and a little brother. No there isn’t another little Brent or Cathy running around out there, my little siblings were delivered to me by MAGIS Syndrome.
As of right now, there are 4 people in the world living with this gene mutation and last Friday I got meet one them— Princess Jadalyn.
When I was at the National Institutes of Health at the beginning of November, my doctor informed me that they discovered another patient who had MAGIS Syndrome. She wanted my permission to give my contact information to this family. I instantly agreed and was pleasantly surprised this family lived in West Virginia. I hoped I would get to meet them someday in the near future.
The end of November I received the sweetest note from Amanda Childress, Jadalyn’s mother. She told me who she was and a little bit of Jadalyn’s story. Right away I saw what a special and strong girl she is. Born as a preemie, this princess fought for her life as she entered this world, but God gave her a persevering spirit from the start. In just the 11 years Jadalyn has been on this earth, she has endured more than most people do in a lifetime. She has multi-organ system failure, severe combined immune deficiencies, mitochondrial disease, encephalopathy with lactic, hypothyroidism, dystonia atrophy, and pure autonomic nervous system failure just to name a few things she battles and this just scratches the surface.
Needless to say, my heart broke for this little girl, but I was so excited to get to meet this tiny warrior. Amanda and I set the date of February 8th for my family and me to meet Amanda, Darin, Maleigha, and Princess Jadalyn.
My family made it first to the Olive Garden in West Virginia and were seated. I decided to wait in the foyer to meet the Childress family personally. When Jadalyn walked in I noticed she wore a beautiful dress and it blessed my heart so much to see she obviously wanted to look extra special to meet my family and I. When she realized I was standing in front of the door, her face broke into a smile and she flew into my arms. The connection we made was quick and strong. She brought me a beautiful plaque that said, “She believed that she could, so she did,” because she said, "me and her can do anything."
She also picked out a special rose for my mom, grandma, sister, and I. Mom got a white rose, Grandma received a red rose, a hot pink rose went to Linsay, and she picked out a yellow rose for me. Each rose blinged out in glitter.
Right away, I saw the similarities between the Childress family and mine. The number one thing I admired was their faith and love for God. Amanda was the strong matriarch and advocate, giving all of her time and energy to her daughters just like my mother did for my sister and I. Darin was the steady and consistent strength that his girls could depend on as my Dad was for us. Maleigha’s love and protective spirit for Jadalyn mirrored Linsay and I’s relationship. And of course, I saw so much of myself in Jadalyn, who had fought so many of the same diagnosis’ I have but still wears a smile on her face.
The prayer of all of us for the night was that our meeting would go smoothly and the conversation would be easy. The Lord went exceedingly above and beyond and we became family. The humor, wit, and strength emanated from Jadalyn’s spirit as she beamed listening to her mother share stories about her princess’ encounters with Jesus glowing brightly as He protected her why she slept. And she grinned when Amanda told us of the angelic guests who have come for dinner that only Miss Jadalyn was able to see and assured her family that he loved them and watched over them.
Her childlike faith is amazing and it showed in my favorite story Jadalyn’s father shared with us at dinner. Their church was having an Easter play and Jadalyn went to her Sunday school class. Unbeknownst to Darin and Amanda, the children were watching the play and Jadalyn saw that “Jesus,” was attending their church that night. When Darin and Amanda went to pick Jadalyn up, she was livid with her parents. “Jesus was upstairs and you know how sick I am and you didn’t take me to get my healing! Why did you take me downstairs when Jesus was upstairs with you?!” She exclaimed.
Eventually, Jadalyn’s parents were able to get her to the man who played Jesus that night. Their friend laid hands on Jadalyn and prayed a powerful prayer asking God to heal the little girl. “We have been able to see Him in absolutely everything, throughout all the hardships and struggles. Jadalyn is so very happy and knows that God is going to heal her.” Amanda shared.
The night ended with pictures, hugs, and plans to meet again soon. It’s been a huge blessing to not only get to meet this sweet girl, but to get to pray for her, because I know exactly what she’s going through. When I came up with the name MAGIS Syndrome, I envisioned patients just like Jadalyn who know they are MORE than their disease and who would maybe become like family to me and this has happened. The four MAGIS siblings have fought many battles, but we’ve had so much joy on the journey as well. It can be a tough disease to live with, but when God gives you people who not only understand, but you can lean on…well, the MORE the merrier!
