2019 was a year that changed Aliyah’s life forever when she was diagnosed with the rare brain tumor craniopharyngioma. The tumor sat directly in the center of her brain and wreaked havoc on important structures. Surgery included a complete resection of her pituitary gland as well which has lead to many medical conditions like diabetes insipidus (DI), adrenal insufficiency, hypothyroidism and more endocrine deficiencies.
Aliyah requires full replacement of all hormones in her body to function and live. She has also developed short term memory loss, loss of thirst mechanism, and even heart condition.
Mariah, Aliyah’s mom says, “with all the changes, life has been rough for both Aliyah and the rest of our family, but groups like this [Raymond A. Wood Foundation] have helped a lot. Being able to have access to medical equipment that makes her life and our life a little easier is super important.”
Because Aliyah’s DI it is very hard to manage, she needs frequent blood draws to check sodium levels and lives some distance from a lab. Having a handheld blood analyzer allows the family to do a test at home making it much easier to manager her sodium.
“Small things like this massively change Aliyah’s and our life’s by giving us freedoms and less stress when it comes to sodium issues and having to travel for other things, said Mariah. “Aliyah is a strong girl and is surrounded by family, friends, and a lot of amazing people out there. One thing we take from this experience is there are some amazing people and hopefully Aliyah’s story can help other families who are going through a situation like ours.”
To help us continue to support pediatric brain tumor survivors like Aliyah by providing these devices and our work to develop a home-use sodium meter that is more widely accessible and affordable in the years to come, please make a gift to our Roar for Rare campaign.
Follow Aliyah’s journey on Tik Tok: @fightingfor_aliyah
