Author: Joe Lane

In 2013 when Mariah was nine years old, she had a headache that would not go away.  After several visits to various doctors, Mariah went to the emergency room at Children’s Healthcare of Atlanta.  The emergency room doctor initially thought Mariah had a viral infection but ran a CT scan for confirmation.  The CT scan showed a mass in Mariah’s brain which required a follow-up with a neurosurgeon.  Mariah underwent brain surgery and had the tumor removed and the prognosis was positive, Mariah was expected to recover and unlikely to have any more issues. 

Unfortunately, less than one year later Mariah had a regrowth of the tumor which required another surgery for removal.  After the second surgery, the doctors learned that the tumor was extremely aggressive. The type of tumor is called ATRT and the chances of survival are about 50/50. The doctors explained that Mariah would be extremely sick and spend the majority of the next year in the hospital. Mariah was sick at the beginning of treatment but later in the year she was doing so well that the doctors were baffled at how well she tolerated her therapies and medications. Towards the end of Mariah‘s treatment, she had difficulty walking and increased weakness in her legs.  An MRI revealed that she had extreme swelling building in her brain and it was affecting all of her motor movements. Mariah’s condition continued to worsen, she eventually lost all of her ability to move and was very close to not being able to breathe on her own. Around 2016 Mariah was using a machine to rattle her lungs so that she would not get pneumonia.  She also needed help with all of her needs including going to the bathroom, getting dressed, and turning over in the night. Mariah was almost like a zombie.

Since 2016, Mariah’s family has been on a path to help Mariah get better. The treatments that she received for her brain swelling left her with bone integrity issues as well as post-menopausal.  She also needed double hip replacements and hormone replacement. She has had one hip replacement.  Mariah has lived with a lot of pain and sadness as to why this has happened to her. However, God has truly used Mariah to grow her parent’s faith and to touch many lives around her in the community. Mariah continues to show signs of improvement to this day. She has not regained the ability to walk or use of her hands but she is much more alert and spunkier! Currently, Mariah attends therapies twice a week and is active in the church.  She is also involved in a special-needs organization called, Extra Special People. These outlets have provided an abundance of joy for Mariah.  Mariah and her parents are so thankful for their family and community.  They are eager to see what the future holds for Mariah and do not think God is finished healing Mariah. 

Photography by Jennifer Boxley Photography

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Brylee was born with a rare disease, Nemaline Rod Myopathy.  She spent time in the NICU at Children’s Healthcare of Atlanta.  Brylee had a tracheotomy procedure in order to keep her alive.  It was also explained to Brylee’s family that kids with severe Nemaline, like Brylee, typically live 18 months and can only use their eyelids since the disease affects the muscles.  Brylee has defied the odds, she can move her arms with help, kick her legs, and talks nonstop.

Brylee is now 10 years old and has had multiple surgeries and visits to the hospital. Brylee is a fighter!  Brylee can drive her wheelchair around the house.  She loves playing with her cousins and friends along with trips to the playground.  Brylee loves animals and wants to be a veterinarian when she grows up.  Brylee and her family are so excited about her accessible bathroom!

Photography by Kristi Weaver Photography

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